Here in my country people are more afraid of hospital bills than dying. So most don’t get even just checkups for most their lives. Which is also why quack doctors/practice are still thriving.
HONESTLY thank you. I have a connective tissue disorder of some sort (undiagnosed but my mom knows she has one too) & I have symptoms but gaslight myself daily 🙃
And just because your symptoms are due to an underlying condition with no cure, or aren't actually damaging you (you know, beyond pain, fatigue, lack of sleep, lack of work, mental health etc....) doesn't mean they aren't worth treating!!!
I’ll never forget overhearing one of the doctors in a&e telling a nurse that he was certain my stroke-like symptoms were because I must be pregnant, even though I had 5 minutes prior to this told him I definitely wasn’t pregnant. After days of tests in hospital, I was then diagnosed with a neurological condition. The speed at which male doctors disbelieve young female-presenting patients is astounding.
I also had stroke like symptoms for a while and had the same response... same with when I had a gallbladder polyp that hurt like hell and when I was in high school and had a stomach ulcer. They tested me so many times for pregnancy and didnt believe when I told them I wasnt and couldn't have been at those times. I think with the polyp they did 3 pregnancy tests before sending me to get an ultrasound and even then didnt treat me after.
I've had a doctor grill me about potential pregnancy before starting a pregnancy-unsafe drug. At the time I was on the pill, hadn't been sexually active for over a year and was ON MY PERIOD AT THAT MOMENT. For goodness sake I was blasé because the kid would have been 6 months old by then if I had gotten pregnant last time I slept with someone, not because I don't take potential pregnancy seriously!
@@mouseluva yep. “Is there a possibility you could be pregnant?” No. Definitely not. “Maybe we should do a test to be sure” I really don’t need one, I’m definitely not pregnant. “But how can you be sure?” Because I haven’t had sex with someone who has a penis in over 10 years. “Oh”
Had to have a CT scan for stroke-like symptoms last month and legit said "probs not pregnant but I'd rather take care of me first before a hypothetical foetus" 😂 thankfully the doctors and nurses took me at my word and didn't make me take a pregnancy test.
It's a whole issue. I have partial strokes and seizures as part of my Atypical Complex Chronic Migraine. More so in the really bad migraines, but stroke symptoms in a young person are rarely taken seriously. I almost had a full blown stroke due to a migraine medication reaction, that's when it was finally taken seriously.
Just came back from a doctor trying to medically gaslight me. No, no, not today, lady. (The doctor) Don’t let that get to you. Please continue to advocate for yourself. Healthcare professionals are like any friend or any relationships. You won’t be friends with everyone, and you won’t trust everyone you meet and you can take a long time to find the people you trust. Same with a doctor. Keep searching!
God, there is nothing more soul sucking than going to doctor to doctor and countless appointments knowing that something is wrong and undergoing test after test only for them to tell you that everything is normal, maybe you just need more sleep/a better diet/ maybe it's all in your head. Even when doctors are genuinely nice and understanding, I feel like I'm wasting their time or an idiot and that I'll never feel better and never know why. It doesn't help that I do suffer from sometimes quite serious hypochondria, meaning there is a very serious chance something COULD be all in my head. And it makes me feel guilty to even go and get tested in the first place.
“You’re healthy as a horse!” I’ve heard that so many times. And all my blood work is normal. So I must be healthy. Except I’m not. It’s so discouraging. But Jessica is a ray of light and love and gives me courage and motivation to keep pushing forward.
I had to get angry at the doctors. When I demanded they do their job, that I was sick of their BS, they finally listened. I told one doc in a very harsh tone. "I am going to die and if you don't find out what is wrong with me, it will be on you" I was leaving and ready to slam the door hard enough for the hinges to come off. She said softly, "come back in, I's going to test you for Celiac and H-piloy". The test came back positive. I learned that I had to be the one to push my doc, even it it meant getting them upset. I have been a strong advocate for myself every since. I go in expecting them to do their job and I won't leave until I am satisfied. Don't feel guilty, they get paid a LOT of money. You wouldn't pay a house cleaner 20 an hour if they came in and just talked to you and left, would you? Expect them to do their jobs. They get off way too easy.
I just want to say that if you haven't yet, I hope you find a primary care physician that knows you and works with you; someone who does there best to relieve that guilt if you have a question and helps work with you to find what works best for you while validating you and your experience.
I have a doctor right now that's finally being understanding and not dismissive of me and I feel like I'm bothering him and sound like an insane person describing all the things other doctors brushed me of about for YEARS. I'm putting off calling for appointments to not sound like a hypochondriac. It's insane
One tips if you’re not a cis male that I’ve noticed during my medical journey: focus on how the pain/symptoms is effecting your every day life. Example: instead of saying “I have a hard time to fall asleep due to my anxiety” say “the sleeping problem I got bc of my anxiety is effecting my ability to work”.
Thats a good one. Older women tell me they always talked about their health in terms of “how their husbands complain they can no longer do X” and ALWAYS got treated way better. Its maddening that doct id w fake husbands more than the real person in front of them but its a strategy if you need it.
My son was extremely far sighted when he was a baby. It made him seem to have amblyopia when he was tired. The doctor told me babies are "just like that". I had to take my husband to the next appointment so the doctor would actually test my baby's eyesight! Ugh. My husband called him on it, but I doubt it changed the doctor at all.
Even if you are cis male, presenting your symptoms in an objective and quantifiable way like that really helps doctors and other people understand the severity of what you're dealing with. Subjective experiences of what pain feels like are different for everyone, but describing how it interferes with your daily life is something the other person can put into context of their lived experience
It took me over 5 years to get my diagnosis because doctors didn’t want to run a test, that when finally done, diagnosed me. My husband was told over 5 years they had no idea what was going on with him, and maybe it was psychosomatic. It was Lung cancer. We are both learning how to become better advocates for ourselves, and for each other. To any of you still on your medical journeys, my thoughts are with you!
@@michellem4287 it’s been an extremely frustrating journey for both of us, for certain. Luckily there was a doctor for both both of us (my husband especially) who refused to give up on finding answers.
@@stephenienoel106 No, because his symptoms appeared to be neurological. So they did a bunch of tests and tried medications to try and find out if it was coming from his nerves. How they eventually found it, was he had an bad allergic reaction to some antibiotics they were also giving him, to see if that would help with another issue, his inflamed lymph-node. At the hospital when they were dealing with his allergic reaction, they did a chest x-ray to make sure his lungs were fine (since the reaction had affected his breathing) and that’s when they found the tumor.
I’ve been sick for 31 years but have been actively seeking a diagnosis for 10 years. During those 10 years I received no treatment while My health continued to decline and I encountered a lot of medical gaslighting, trauma, and outright cruelty. I was told over and over that I was crazy, attention or drug seeking, lying, and most often...experiencing a psychosomatic issue. However, as of yesterday, I finally received my 3 primary diagnoses! Ehlers Danlos Syndrome, POTS, and MCAS. I am now being prescribed much needed medications and therapies. I have access to assistance and accommodations. And the symptoms that aren’t covered by my current diagnoses are now being taken seriously and comorbid conditions are being considered. I definitely agree with all of these tips. Be your own advocate, keep very good records and symptoms journals, don’t stay with a doctor who is unhelpful or straight up abusive, stand up for yourself, and educate yourself on your symptoms and experiences.
I am so happy for you for finally getting a diagnosis. I am currently starting the journey to diagnosis after 22 years of no treatment for my health issues. I hope things are going well for you now that you are receiving proper care and I hope that I can as well one day.
Oh gosh EDS must be so difficult to have and actually get diagnosed with. It's one of those diagnoses that quacks and people in the "natural health" world (that are actually just after making you afraid of everything and then selling you things to "fix" you) says that practically everyone has! It would make me so angry to have a portion of the population "cry wolf" like that, if you will; I can only imagine how much easier it would be to get diagnosed with it if there weren't that "oh you're one of THEM" stigma if you ask about it.
@@GaasubaMeskhenet You need an ultrasound for that - actually two - external uterus and intravaginal. I've been through the process and fortunately I don't have cysts, but that is the test. Depending on where you are it can be expensive. See if you can seek a specialist to get the testing done. Just because your GP doesn't know about this doesn't mean it doesn't exist. You need to be listened to.
The "all in your head" explanation is ironically comical to me. I have anxiety, clinical depression, ADD and brain damage. I have a dark sense of humor. Thankfully due to my obsession with the sciences I actually do know what most medical terms are, and if I don't my doctors will happily explain them.
Same,I have a neurological condition where my skull isn't big enough for my brain and I've accidentally laughed at doctor's when they told me my symptoms are 'all in my head' many times 😂 they did not think it was funny oops
I have severe anxiety, clinical depression, and ADD as well. The anxiety gave me IBS, and also being lactose intolerant, these do not merge well. I have slight brain damage which I was told it caused slight low muscle tone which I'm sure does not help my IBS. I also suffer from nerve sensory issues. I can feel, taste, and hear everything to an extreme. This means that my body reacts to pain quite quickly, which sucks cause I feel the pain that most people usually can't. But I can taste about every ingredient in a dish.....but I can also taste phosphates in the water. I am an extremely light sleeper because of this
I don't think I will ever forget that hospital doctor that looked at my MRI and was like, "This thingy here is odd, but you're just imagining everything. :)" and me walking out the hospital crying like a baby. And now I'm terrified of ever going there again. Fun, fun.
I love you babes, that's so unfair and you don't ever have to, I think if you ever plan to go to another place you can sign an release of information so that they can look at the imaging to tell you that hey, something *is* up. I hope that makes sense, though I would talk to the person who is helping to schedule the appointment for you, another thing that helps me, is getting out of their bubble of control, so doing appointments not in person if at all possible and in a safe space, maybe just calling it a consultation to look at previous diagnostic imaging. I know this doesn't fix everything, but..yeah..I know this stuff sucks, like really really bad, @ my old terrifying neruologist. Even just saying thay is triggering. You are loved. Take care of you ❤
As a child in the 60s : asthma was something I did to myself to get attention, allergies didn't exist and I was just "showing off" and when the school were told I had a peanut allergy, my Mum was told that I should " just take the peanuts out". And of course my parents were just being over protective and paranoid.
I've been there, Anne. When I was a kid, I had a problem where I would just stop breathing. Parents treated it as if it were nothing. One time when I was in Junior High, it happened while waiting in line to go into a museum. The person behind us told my parents something was wrong with me -- that I was turning green from not being able to catch my breath. Their reaction? "Kathy just stopped breathing again. She'll be fine." A decade later, a doctor diagnosed me with asthma. Mom asked me when he thought it had started, because she didn't remember me ever having an asthma attack! Is it any wonder we doubt that our symptoms are real? Or that it would matter if we reported them? (I still struggle with that one....) I hope, Anne, that your allergies and asthma are under control and you are able to get help for them!
@@callkathy2010 thank you. All under control now. I think it was well into the 19802 though before I heard about asthma being taken seriously.. Its no wonder so many children didn't make it to their 5th birthday. Hope all is well with you. Stay safe.
Lovelies please remember that just because you may have some psychosomatic symptoms that doesn't mean you have ONLY psychosomatic symptoms, treating your body means treating your physical and mental health issues. Both types of issues are valid, if you don't feel right something is wrong. No matter what.
thank you, I needed to hear that today (as a person who suffers with mental + physical chronic illnesses, and who often doesn't know how to separate the two, and who does beat myself up a lot about it)
Oh how cruely true. I pushed myself to work through 2 years of getting sick more often and often. In the end I barely ever felt realy healthy and no one could tell me why I get sick all the time. Then I spiraled into a bad episode of depression and anxiety and had to quit my job. Tadaa since I quit my job I have not falen ill for months. Wich is a small miracle. It seems my body was just screaming - STOP - and when I did not listen it made me stop x)
I’m still building up the courage to email the neurologist who told me to stop journalling and focusing so much on my symptoms, and they would just go away. He told me my pain and other symptoms were psychosomatic, so by just relaxing and ignoring the pain, it would go away on its own 🙄 Then my psychiatrist, following the neurologist’s “diagnosis”, tried to put me on medications that I didn’t need to treat the “psychosomatic” symptoms. He also told me that with mental illness sometimes comes unexplained pain, and accepting that it wasn’t physical, and start ignoring it, would help it go away. Basically: as previously established, you’ve got the crazy. Here’s some mood stabilizers, now get out of my office. Thank God I chose not to use their advice, because after several more months of pain, I got in to see a physiotherapist and was almost immediately diagnosed with a treatable physical condition. Anyway, there’s a big part of me that wants to email that neurologist to tell him how wrong he was about my condition. The amount of stress and pain I went on to experience because he didn’t believe me is unacceptable. It bothers me to no end he may be giving that same advice to other people with treatable pain.
As an American, I second Jessica's warning to not ask for medication in the US prior to getting a diagnosis, especially as a woman. Both my mother and grandmother have chronic nerve pain and have been accused at various points of faking their condition in order to access "unnecessary" medication. Neither of them was provided with medication until after they received a diagnosis, and that required visiting multiple doctors until they found one who listened and believed their pain was real. I will also add that my girlfriend (who also has EDS) went undiagnosed for years and received no medication, as her doctors blamed her joint pain on being overweight. It wasn't until she lost a significant amount of weight that she was finally diagnosed and was able to access medication and physical therapy.
What happened to you girlfriend happened to me too! I got diagnosed with EDS a few days ago after years of doctors telling me A) I need to lose weight and my joints will feel better B) it’s psychosomatic and C) my tests indicate no problems so I’m actually perfectly healthy!! (Never mind that I’ve had chronic pain since my childhood lol) the American Medical system is not made to support and diagnose chronic illness and pain, especially with the way our insurance works
Whenever my sister goes to an appointment about her conditions she asks the doctor either let her record the full conversation or to give her a plain English summary of the appointment (also recorded) - with a focus on the actions she needs to take. We've never had a doctor or nurse turn us down yet (our mother had similar issues) and it really helps us provide her with the extra support she needs with her memory and continuity of support when different family members are doing the hand holding (she's a very good self advocate).
On a high part of the spectrum, always thought I was...I finally got it in March (along with a much better ADHD treatment than in the past) after advocating and researching who could help me out. You are your best advocate to know what's wrong with you.
Literally every single therapy session starts with an uncomfortable silence after which my therapist will reliably ask "How are you?" and about 95% of the time I start by saying "oookaay" and then proceed to spend an entire hour talking about some of the things I've been struggling with in the 2 weeks since our last appointment. In case you're wondering, 5% is when I say "Surprisingly well right now, although..." or something along those lines.
That sounds great. That to me is massive progress and you should be proud. I spent so long saying I was "fine" or "okay" etc when I was suffering because I was sure no one wanted to know or cared. The biggest difference in my life was when I started being honest, even hesitantly. You really should be proud 👏☺
hEDS here! I was medically gaslit for a decade before I got my diagnosis. Now I am one of the very few openly chronically ill people who is "out" about my disability in my field. The more we talk about it and normalize discussions like this, the better off chronically ill folks are in future as they pursue diagnosis (or don't), move through the world, ask for access needs being met and more. Thank you, thank you, THANK YOU for the hard work you put into this.
If someone is interested in the story I just want to point out that Robin has a video on this topic on her channel. Her channel covers disabilities, LGBTQ+, opera, cats and tea. Have a look! :)
Have a doctor friend who got diagnosed while getting their doctorate, we need more representation in healthcare and I appreciate you! Will check out channel.
the feeling of being sat in your doctor's office and saying "I'm fine actually, I'm doing great" when you're obviously not doing great at all is too relatable
That's classic for any with chronic illness and/or chronic pain patients. We get in the habit of just telling people that we're fine because most people can't handle the true answers.
@@kfemme68 I totally agree. Also, 'fine' for me often means 'It's not the worst it's ever been. It's just as bad as usually, I can somehow cope with it.' Doctors (and everyone else) interpret it as 'I have no problems or symptoms' though. So while I still say I'm fine out of reflex I try to then specifiy that I mean I am in pain and all but am mostly able to handle my day to day chores (which are already altered to me not being able to do some things and needing to rest often) at the moment.
The bit where you’re talking about organizing medical letters and how your memories about it work is SO relatable. I have ADHD and possibly autism, so my brain just files information in weird spots sometimes or saves the least helpful details 😂
In my family we call this "strangely observant" I notice odd specific details I can recall months later, but don't notice or remember big obvious stuff
@@MxDiagnosis I'm a very cautious person who stays in their house most of the time and I've done a genetic test that said that there's nothing there, so hopefully there won't be any surprises! But just in case, yes.
I'm 22 and have just been diagnosed with arthritis. I've already had waaay too many people questioning the diagnosis because "Isn't this an old person disease? You can't possibly have it this young." and it is so tiring to be invalidated constantly. The pain has been with me for some time, but I ignored it for a while, dismissing it, thinking "everybody feels pain in their hands, right?". I started being vocal about my pain to people around after having the diagnosis, now I've heard something like "do you think that maybe some of this pain could be psychological? You've never complained about it before". Now I'm struggling to make them understand what I feel and how they can help.
I've had arthritis in my knee since I was 10 years old. It's more common in older people but young people can have it too! Thankfully I've had support, but the best advice I can give is just be clear with what you need. Sending support!
“You’re too young “ in some variety is something I’ve gotten every time I’ve brought up my arthritis diagnosis (got it when I was 3) and it is so tiring
I got diagnosed with Psoriatic Arthritis at 21 so you are not alone! Ive heard all those ignorant comments before too sadly and I just tell them “well clearly not” and then don’t explain further.
I'm going to be beginning my own diagnosis journey for probable arthritis. I got arthritis in my knee after damaging and then losing my meniscus, and the pain I have with that reminds me of basically every other pain and stiffness etc I feel every day. I'm hoping that fact and this video will help me get my diagnosis
If it wasn't for you talking about chronic illness and disabilities online, I'd probably still be gaslit into believing it was 'just hormonale imbalance' or depression and driving myself into the ground. But you talked about ME/CFS some years ago and after some reading, I brought my suspicion to my doctor. Got sent to a specialist and got diagnosed with ME. I can never thank you enough for making the videos you do. It changed my life ❤️
@@roses_are_rosie8412 in my experience it takes about 6 months to get the diagnosis, because they have to rule out every other diagnosis AND u have to prove that uve had the illness for that long!
As far as I know it isnt a diagnosis of exclusion anymore in the states (I think I read it on a ME/CFS awareness website and confirmed it on the CDC website). I have been asking the same if my doctor for over a year now and she still keeps telling me she cant be sure despite thousands of dollars of tests and 2 years trying to figure out what is wrong with my body since it is only getting worse... I tried seeking ho from other doctors in the past and had worse treatment, but it is so frustrating. I fit the bill for ME/CFS and FND almost to a T but when I ask if something could be the issue doctors try to say I'm a hypochondriac... I hate doctors and going to doctors :(
@@roses_are_rosie8412 First, I has a ton of blood work done, then a brain scan, to exclude everything else. Then I was actually referred to a psychiatrist who specialised in it, and we talked through my symptoms, medical history and daily life/activity level. Took about 6 months to get the diagnosis. Sadly, his department was closed down and I briefly got transferred to a center that do PACE for various ailments. Now I'm sort of in limbo and the only real practicing specialist in the field is private and very expensive.
its so weird because they just kinda told me ''idk what you have bro but your pain is definetly chronic'' and then kinda dropped me. after 2 years of going to a lot of doctors, lots of all kinds of doctors, too. they cant figure it out and except to accept that its just some chronic pain and take strong pain meds. and im 17 so i dont know where to go at this point. im in paralising pain
I've never had to deal with a chronic illness, but I grew up with mother who is a Christian Scientist. Any medical issue was bombarded with questions like "What's the emotional cause of your migraine?" (lol yes lets talk about emotional trauma and pray about it while I can't see straight) "Is this stomach ache because you got into a fight with your sister?" "Oh you're feeling depressed? Count your blessings and get glad again!" There is a reason I don't talk to my mom about anything health related (mental or physical) anymore and I have a visceral reaction when she asks about it.
lol a doctor tried to tell me my ibs was anxiety like. ma'am. im in my 4th year of psych. i Know whats anxiety. also every "consider losing weight to solve every single problem ever!!!" makes another finger on the monkey paw curl
This is what my husband's family did to him for 10 years. They also downplayed his issues to doctors so the docs didn't have a chance of thinking it was anything but anxiety. He has Crohn's Disease. The fact that he didn't lose part of his intestine during that period is due to sheer luck. And the best part? Now he HAS anxiety from medical neglect.
Omgsh yes. Just loos the wirght. For me loosing 20 kilos made my chronic pain much worse. Still a person in my near family told me it was just loosing more that would help. That my brain needed to adjust.. Seriously I'm so tired of everyone believing that all my health issues is because I'm overweight.. Besides my Dr. He is absolutely amazing thank the higher powers.
I have both IBS and ulcerative colitis, which made the diagnosis of ulcerative colitis more difficult. The first time I know I had ulcerative colitis symptoms, my doctor told me I had a stomach virus. Then things got worse and I went to the GI doctor who diagnosed my UC. I guess I can't completely fault the first doctor since the more severe symptoms did not show up until after she gave the wrong diagnosis.
We had a family friend who was chief of psychiatry at several large national hospitals, and sat in the national board of health. They seriously told HER that "have you considered maybe it's just stress?" 0v0; To which she whipped out her license, smacked it so hard into the table that it skidded across and yelled bloody murder, because she _did not_ finally get to a specialist only to have him amateur psychology her. Oh, yes. It was MS. She was in a wheelchair within fewer years than it took them to effing look at her brain and diagnose it.
I couldn't agree more I started my journey at March during the start of the pandemic so it's really useful to have these sort of tips and they still haven't found out what I had so I have to go back to square one so that's fun
Every doctor I’ve gone to about my chronic pain has said things along the lines of “I’ve never dealt with this before...” “You’re too young.” “The only name for chronic pain I’ve heard of is Fibromyalgia, but you don’t have that.” Even when I drove multiple hours to see a neurologist at the best hospital in my state. And, yes, I live in the USA, so my parents have paid a LOT of money to get told I had chronic pain. I diagnosed myself with chronic pain in 5th grade!
For my fellow US folks, here's what I found helps with talking to doctors about pain. Sorry y'all, it's a thesis. But just in case it helps. 1. First, know that most of the time, when a doctor is side-eyeing you because you need pain-relief, it's because they're scared. The DEA - the Drug Enforcement Agency - monitors how much pain medication doctors prescribe, how often they see you, how often patients change doses, how many scripts they write, which pharmacies they send to, etc. And if they don't like what they see, they'll interfere in their practice, tell them to change *patient care*, or medications, or how many scripts/month...or they can lose their prescribing abilities. While it's definitely prejudicial - "Hey, I'm gonna make a snap judgment that you're drug-seeking or drug dealing based on race, age, sex and ability" - it's not all motivated by _pure_ racism/ageism/sexism/ableism/etc. There's a lot of doctors that want to help, but they're anxious or don't think it's worth it. 1a. After the FDA and CDC released some _recommendations_ for how to prescribe pain medications, some states took it as gospel and made it _against the law_ for doctors to prescribe over a certain dose. Other states made another hoop for doctors to jump through, where they have to document why they went over that dosage. So they literally can't prescribe what works for you, or are overwhelmed by the State *and* DEA document requirements. BTW, this almost become national law a couple of years ago, until disability advocates stopped it in committee. 2. So, given this, never ask for specific pain meds. I know, it sucks. You know which ones work. But that is red flag #1 of drug-seeking, the whole reason doctors are getting regulated this hard, so it freaks them out. So instead, you can bring in a list of all medications you've tried, along with side-effects and efficacy info for you. "This one worked well, but it made me sleep all day", "This one made me a little groggy, but the sharp pain in my back was bearable". That kind of thing. 2a. If possible, get a genetic test (ex. GeneSight) that shows which pain medications your body breaks down the best. It helps you both know maybe why one works better than another, or which need dose adjustments. And it SERIOUSLY helps with insurance companies that try to tell you which pain meds to take. 3. Bring in a pain scale with descriptors on it, and go over it with your doctor together. Like, printed out or on your phone, physically viewing it together, lol. Most of us have learned never to say "11" - again, those doctor side-eyes. But since pain is subjective, it really may be your 11, and we are desperate to be heard. Problem is, doctors have a scale _they've_ been taught. And for them, a "10" means the patient is unconscious from the pain. It's reserved for things like devastating car accidents. Pain also causes physiological responses, like increased heart rate and blood pressure. So if you come in, normal heart rate and blood pressure, speaking in normal tones and say it's an "11", they think "Liar" or "Malingerer", not "This must be really bad for them". So, we have to accommodate the doctors and use their pain scale terms. So, for me, I learned that despite being in pain all the time, if I'm able to distract from it, that means I'm at a 4-5. Once I can't distract and nothing else helps (medication, ice, heat, stretches, shower, sit, stand, lay-down), I'm up to 6. My best days are a 3 (ooo, that's bliss) and my worst was an 8, where the pain made me puke. But I have never, ever hit a 10 on their scale. Just sharing that part in case it helps you understand the kind of range doctors are looking at. That's why I say have that pain scale ready, so you both know what you're describing. If they still won't believe you, or if a doctor thinks a 5 "isn't that bad", or are dismissive in any way, if possible at all, please find another provider. They aren't gonna believe you anyway, so if you can help it, save yourself the crazy-making gaslighting.
Could you please also make a video (if you haven’t already) on your favorite products for chronically ill/disabled people? Obviously some would be disability specific but others (such as favourite heating pad or favorite pain relief device) would be applicable to most people.
That last part really hit me. I'm not trying to get a diagnosis for a chronic illness, but I'm trans and currently in the process of getting HRT (Testosterone). So essentially, I'm trying to get diagnosed with "trans". I was very recently told that my case is very "untypical" and the process was stopped because of that. I wasn't told, I'm not trans, but it's still a major setback and shock in my eyes. It honestly brought up a lot of self doubt(which is essential to the process I'm being told, but still) the reminder that just because you arent diagnosed yet, it doesn't mean you do not have the thing you think you have is really helpful and meaningful to me right now. If you happen to read this: thank you, Jessica, for being so helpful, kind and uplifting.
i am currently in the process of getting diagnosed with what i believe to be Chronic Fatigue Syndrome and this video made me feel so understood, i'm actually crying while writing this :') being gaslit or simply dismissed not only by doctors but also by the people who are supposed to be my immediate support system was and still is an incredibly disheartening feeling and sometimes i feel so hopeless and alone because I KNOW there is something wrong with me and just because it's not showing up on paper it doesn't mean it's not there... this video made me (and i'm sure many others too) feel so heard so thank you, Jessica
I am really sorry you feel this way. I have been diagnosed with CFS for more than 10 years now and if you need any help gathering resources or checking your symptoms and making sure they track (or anything else really), don't hesitate to reach out to me.
A point, for really anyone, that was made here..."you are never too old to have someone hold your hand"...I am terrified of dental surgery, and being put under...I am in my 30's and still asked my dad to come with me. Its ok to have someone you trust when you are doing anything medical, I repeat...ITS OK, you are not less of an adult or a person, or weak for that matter.
Actually had a doctor tell me my migraines were all in my head. 🤬 am getting a diagnosis done for joint pain (chronic lifelong) at 62. Will let you know. Thank you so much for all you do.
@lilipop draws omg i’ve had a constant headache for a year and half and the consultant threw a migraine diagnosis at me even though i suffer from muscle pain. i’m having to wait for a referral to a second neurologist now for a second opinion. hope all is well x
@lilipop draws I had migraines my whole life and had occasional breaking out of rashes. It took years of pain and suffering to get a dx of Polymyalgia rheumatica (PMR), and now I have freedom from migraines. I think of all those headache pills I took . . .ugh I could have had treatment years earlier, but there are too many lazy/gaslighting, doctors. Also, if you have not yet been tested for it also, ask to get tested for Celiac. So many people I know had headaches caused by celiac. I'd want to know the cause of the headache, not just get treatment for it. Good luck.
My father-in-law always said, "doctors are practicing." That was so freeing when we were trying to find my diagnosis. Any time I meet with a new doctor, or something new is happening, I bring along a family member...usually my wife. I also attend others' important doctor appointments for support.
I’m beginning my journey to try and get a diagnosis after my sister encouraged me and told me that I don’t have to just sit there and suffer, and that maybe its not normal to hurt all over all the time for the past 10 years. she’s honestly the first person whos told me that I didnt just have to deal with my pain and that I deserve to try to figure out whats wrong and treat it. thank you for this video. I need to remember to trust myself & advocate for myself
As a future doctor, thank you for sharing your experience. I am sorry you have gone through so many problems in the medical system. Your experience with your chronic illness is very interesting and educational to me....I hope your videos will help me do better than the other MDs :)
Not an illness, but I have my first autism discussion with a doctor next week and this video is well timed to say the least. I've heard a lot of horror stories from women trying to get a diagnosis. I needed this
I ended up taking my partner as an advocate (and support, and to help me remember) to my diagnostic assessment. If you have a good support I'd recommend bringing them along, or getting them to help you write out your notes beforehand if you can't take them (having lists of all of my "odd" behaviours from childhood to adulthood was what really pushed the psych from not-sure to diagnosis). Good luck!!
As someone who's been told it's in my head for 18 years, many, many doctors and just being released from the ED for the 5th time in 6 months with "we don't know what's wrong" I really terribly needed this video. Thank you so much Jessica!!!
I just got diagnosed with ASD and CFS/ME at around the same time so it’s been hard coming to terms with two pretty large, life altering diagnosis’ :^} but I’m slowly becoming a more authentic version of myself which is lovely! Tysm for this 💌
Doc kept saying I had Fibromyalgia, lupus, and Rheumatoid arthritis. Instead it was Celiac, polymyalgia caused horrible headache when I used my arms, avascular necrosis (bone death)and more. Now I am needing a wheelchair and need a bilateral hip replacement and my teeth are breaking and falling out. I kept telling them my symptoms didn't match what they dx'd me with, so I kept looking for new docs. Finally found some in a teaching hospital and forced them to keep looking until I was satisficed with the dx. It took 60 yrs to find the right team of doctors. Frustrating experience
@@cbryce9243 I'm having a similar experience. Diagnosed with fibro and I keep saying docs the symptoms don't match what others with fibro seem to be experiencing and they just think I'm saying this because I don't think fibro is a real disease and lecture me before sending me home. It's good to hear that you found the right team of doctors. I'm really glad for you. But it's such a shame it took so long and no one should have to go through this!
I didn't come here to cry, but here I am, crying. I've been treated for depression and anxiety for over 8 years now but no one is willing to put their name on a bit of paper for me for official stuff. It's easier now I have an autism diagnosis, but man was it a pain in the ass before that getting accommodations starting uni for a mental illness I DEFINITELY have without someone being willing to sign on the dotted line. It's not even like I have an uncommon condition! So many NHS professionals will say they don't have the training or it's someone else's job to make the call and be ever so kind about their hands being tied by bureaucracy but damnit NHS why is it easier to get a cocktail of crazy meds than a bit of paper saying why I need them?! Best of luck for all fellow spoonies hunting for the bit of paper that will make their life easier
I do not have a chronic illness, (though I do have a speech impediment so I guess I do have a disability) but hearing you talk about your disabilities so openly has changed my view on chronic illness and disability significantly this past year or so, and I will forever be grateful to you for opening my mind and showing me an entirely different worldview than I've had the (displeasure) to experience at home. Thank you so much for that. Thank you for inspiring other people with disabilities or chronic illnesses who watch your videos to share their own experiences, knowing that there are people out there who will listen to and support them. Thank you for being such a positive influence in *my* life. You're a wonderful and awesome human being, and I wish you all the best. ❤❤❤❤
Thank you so much for this video 😔💜 it took me 20 years to get a diagnosis for endometriosis. One (male) doctor even told me women tended to be paranoid thinking we had endo, and once a nurse looked at me after being brought it by ambulance and asked the paramedics why they’d “wasted” an ambulance on me. Sighs. It’s one of the hardest battles I’ve ever fought (and still fighting...)
I once had a doctor suggest that maybe my physical symptoms were “just” a physical manifestation of trauma from potentially being molested as a child. I was NEVER molested as a child but that was his best assumption since my symptoms started around the age of 8. That appointment was so traumatizing, I left on tears.
Jessica, you really are doing an amazing job in educating us! I’m so glad I found your channel. You broadened my horizon and helped me to have a better understanding of chronic illness and disabilities. Thanks to you I started learning sign language again ♥️ much love from Germany!
I got a diagnosis but still cant find a dr that wants to treat me. Ive been trying to deal with it for 8 years since by myself. This community means the world to me
On the mental health front having a supportive psychiatrist who can verify to other doctors that your symptoms are physical and not a product of mental illness while also looking after your mental health to help make sure you are only having to deal with your physical symptoms makes a huge difference. That piece of paper saying your depression is reactionary to your illness not the other way around is essential to being taken seriously.
Almost three decades of living, almost a decade with depression, almost 4 years with chronic pain and horribly declining physical and mental health, almost 2 years of actively trying to fight my way to somehow get a diagnoses and help... and some months since almost giving up everything... how is it that it took this long for me to hear the words "You matter"... thank you, Jessica.
i have gastroparesis suspected heds, as well as pots. i got sick 2 years ago, and saw three different doctors, all telling me i was doing it to myself and it was good i had lost weight (60 pounds in 3 months). i was finally diagnosed this year. i’m now starting a liquid diet to hopefully avoid tube feedings. the biggest advocate is yourself 💚
I'm getting diagnosed with Cushing's a disease, a rare disease, after many years of struggling and being misdiagnosed and told I was crazy and had psychiatric admissions (this disease also causes depression, panic attack, insomnia etc). Thank you so much for this video. I've met so many doctors who told me I am perfectly normal because I achieved important results in my life (a degree, driving licence etc). They always thought I was just being dramatic, they now think a brain tumor caused Cushing's disease and caused all of this. It lead also to me having osteporosis at 20 and a spinal fracture. Thank you again for this video, your words give me hope and you look like a super kind person! Hugs to anyone who's struggling with chronic and rare diseases in the comments :)
Having a chronic illness that manifests as both "ew, what is that?" and "why can't you walk/climb/do this thing faster?" is a nightmare. Luckily I moved after my diagnosis, and when people asked, could just be, "oh yeah. my body's all fucked up. I'm just like you, just wonky in this one weird way most people don't get." My coworkers have largely been, "oh. That sucks. Let me know if you need help, ok?" But I understand how wonderful my coworkers are, and how privileged I am to have a job that brings in supportive and awesome people to work around me. After a decade (in the past) of fighting through doctors, I finally found one that was like, "you know they have drugs now for that?" and got me a prescription, and my quality of life increased SO SO SO SO SO SO SOSOOOOOOO much! Now I know to just tell new doctors: "I have X. I like drug Z. It has been effective for me, and has solved symptom A, B, and C. Let's get me some Z, if you don't have any concerns." Usually it's just, "yeah, that's 100% what I would say. Let's get some bloodwork done so we can get this going." Occasionally it's "damn straight. Prescription's submitted, you should have it in two days, and it should last a season or so." Love and Peace to you all!
I've been dealing with doctors who haven't found anything wrong with me despite having chronic back pain for about 23 years...and I've finally found a doctor who's taking my pain seriously and I cannot even begin to tell you how relieved I was.
I've been really looking forward to this ever since it was announced! I've been having this 3 year ongoing battle with doctors because no-one will take me seriously. I'm in pain 24/7, somewhere, somehow! I'm weak all the time, sometimes I can barely get myself out of bed because of the pain I wake up with in the mornings. I've done blood tests, nerve conduction tests, x-rays, seen a physiotherapist, ruled out arthritis, ruled out muscle sprain. Every single doctor keeps dismissing my pain, first it was just growing pains, then anxiety pains, and then it was autistic pains, and then it dyspraxic pains. With every doctor that dismisses me, the voice in my head keeps getting louder and more persistent because I'm getting tired with this pain and no answer, no access to treatment for it. I'm so passionate about neurodiversity, and I always advocate for and validate those who self-diagnose neurodiversity. And yet I've been so apprehensive to self-disagnose myself, I've been apphrensive to questions the doctors or be more forceful with them. I haven't seen a doctor in a while, because I've been so beaten down and exasperated, but this time I plan on marching into that doctor's office with my diary entries and all the research I've done, I need to be taken be taken seriously and I plan on telling him I truly believe in my BONES that I have fibromyalgia and how I identify with so many of the symptoms. But I'm also fucking terrified lmao
You can do it! If you xan, bring someone you trust with you who can attest for your symptoms, in case the dr needs convincing :) I pray that you get the diagnosis and help you need ❤️
Good luck! I too found it helpful to write down exhaustive lists of symptoms, time frames, tests that had been done, and take those things with me to appointments. They helped remind me that I wasn't making things up, that I had done my research, that I know my own body better than they ever can, and that I was the one making choices about medical care. It's really hard, and it isn't fair, but there are good, compassionate doctors in the world who will hear you.
Actually, while I was reading your comment I thought of fibromyalgia and how relatable your words were. Kinda intresting... greetings from a fellow sufferer.
This was so helpful! Thank you! I literally just spent all of yesterday with a doctor telling me, "Well, since you're a teenager, and you have just been diagnosed with depression and anxiety, you're pain is all a result of that." Like, yes that can happen. But I haven't been depressed my entire life but I've had pain my entire life. Sometimes I wish people would just actually listen ugh.
"Process of collaboration" is such a key thing to remember. I've had such better interactions with doctors when I approached it as "I'm looking for a partner to help me with this journey, so let's work together/I'd like to try x thing and see if it helps, are you open to that? " they've been so much more open to my ideas and what I'd like to try.
Getting a diagnosis on my chronic knee problems took about eight to nine years. I started having knee issues in late grade school, but at first I got told I would grow out of it (despite one of my older sisters needing knee surgery at 20). When I brought it up to my doctor later, he said it was just overexertion from working in the fast food industry. Doctor #2 said the same thing a year later. While they were not technically wrong, my knees get overexerted much faster than my peers. At the end of January this year, I ended up in the ER from how bad my knee pain was. The ER doctor was awful and pretty clearly did not thing my knee pain was as bad as it was. He ordered x-rays, but not a full set including what my current doctor described as sunrise view (which would have made my diagnosis pretty clear). He also did not order an MRI. The tests he ordered came back with everything listed as normal besides me being slightly hypokalemic. I had a follow up appointment a few days later with my current doctor where he looked at the x-rays and showed them to me, and he could not believe that the x-ray reader did not see that the track for my kneecaps is too shallow. Because of this, my knee caps don't track right and are starting to deteriorate my cartilage even though I am only 19. I am more or less guaranteed to knee surgery, but since I finally have a diagnosis I can better delay the need. Please please PLEASE do not stop advocating for yourself when you know something is wrong. A diagnosis that can get you better treatment and improve your quality of life is better a little late than never!
I used to let them get away with it, but i put in my head that they get paid a lot of money to help me and I expect them to do their job. I have become very focused on demanding they do their jobs. I do not let them intimidate me any more. I hope you can find your inner pit-bull!
@@cbryce9243 It's not all doctors. But I did hate almost every surgeon I met because they often said after the inspection "You are fine" or "You have nothing" and after a while I learned to translate that to "there's nothing I can cut you open for, so there's nothing in my range of expertise" - this what they actually mean or should say.
Incredible : I was literally (true sense of the word) talking to my mate about my fears of chronic illness via long Covid that are now linking up with my military ptsd, when this episode popped up in my subscriptions via Notifications. That was a long sentence!
Haven't watched the video yet but I can already tell im gonna relate. It took me YEARS to get a diagnosis and even then when I get a new doctor I have to explain my illness over and over again. I shouldn't have to feel like I'm more knowledgeable than my doctor
Thank you for talking about this, Jessica. I'm currently trying to get a diagnosis for an issue and just passed one year of tests and treatment. It's so frustrating.
Thank you so much for this. 10 years ago doctors indirectly accused me and my mum of faking my seizures just because they didn’t present “typically” there are over 100 different types of seizures! I also have GAD, ADHD,OCD, CPTSD and I’m autistic (I personally don’t see my autism as a disability but everyone’s different) a lot of the time unless they’ve experienced something similar themselves, doctors dont seem to understand how important a diagnosis is to people. They talk about not wanting to give someone a label but for me a label is everything!. Wanting a diagnosis doesn’t equal wanting the illness/disorder It means I’m not alone and if you name the monster they you can slay it. “It’s all in your head” is the worst phrase, where else would I keep my ADHD? In my foot? The song ‘a diagnosis’ from crazy ex girlfriend describes it perfectly.
Do you mind sharing how your type of seizure was diagnosed? Also if you’re up for it what kind of symptoms did you have? I’m also been told my symptoms are complicated and dr can’t figure it out yet. Will see a new Neurologist next.
@@ellajaynes2159 of course! I was 12 at the time so my parents kept a seizure diary as I’d often forget about them (plus ADHD but undiagnosed at the time) first they did blood tests to check for metabolic disorders, then an MRI to check for lesions or tumours which was all clear. Next was an EEG which is a bunch of wires stuck to your scalp with goop then they try to induce a seizure with a flashing light and fast breathing. There was no unusual activity so we tried a sleep deprived EEG and still nothing and I was finally diagnosed after a video telemetry which is an EEG with superglue while you stay in hospital and you’re filmed for 4-5 days. This process took around 7 months on the NHS. We had some trouble finding the right meds for me but everyone reacts differently to them. I managed to go seizure free for a while aged 14-16 but started with tonic clonics at 17 which I’d never had before. Fortunately they were controlled as soon as I started on phenobarbital. But my partials continued. Shortly after I had a year of tests to see if I was a candidate for VNS or brain surgery but I wasn’t so more meds! I’m almost 23 now and average at 6 seizures a week. For me they feel like a sense of impending doom and although I’m completely awake, I’m not particularly alert. I’ve also had deja vu, myoclonic jerks, smelling something that isn’t there or things just feeling ‘weird’ When I moved from paediatric neuro to adults I started seeing an epileptologist who suggested it was worth looking into brain surgery again but a) COVID and b) I’m afraid of hospitals 🤦♀️ I’m working on that at the moment though so hopefully one day. My current meds are lamictal, phenobarbital, zebanix, sertraline, fexofenadine, vitamin D and melatonin, only the first 3 are for epilepsy though. Everyone’s experience in diagnosis and treatment is completely different but I do highly recommend an advocate. Also sometimes you just have to keep pestering them, you know your own body and you know when somethings wrong. I apologise for the essay and I hope this helps!
@@Catmum1998 I appreciate your essay. Thanks for taking the time write all that. Wow that’s a lot of tests and time to get answers. Thanks for sharing I can relate to a lot that!
Everything about this video made me feel infinitely less alone. I can't thank you enough. Finally got a rheumatology appt two years ago after decades of pain, only to be told to go and see a shrink. Needless to say I haven't been back to the doctor since. I can barely walk at the moment and feel so helpless as I can't cope with being turned away again. The bit about how your brain works with important papers etc literally made me shout out "That's ME!!"🤣
I just got a rheumatologist appointment too and the moment he knew I was a uni student he completely dismissed me. Handed me a fibromyalgia leaflet, told me "it's not actually fibromyalgia, your symptoms are mild (they're not) and in fact you don't even have an autoimmune disease". When I looked at the leaflet he had condescending underlined "sleep" "exercise" and "CBT".... I feel like I've hit a dead end. Waited 4 months just to be told essentially that I'm a lazy uni student. It also clearly states in my medical record that I did physiotherapy and it didn't help me - and he suggested I just do it again anyway...
Living in the US, I have found that avoiding the words drug or medicine, I was able to get the appropriate treatment. Seeing a MD over a DO will also increase your likelihood of receiving medication. The best phrasing I’ve found is ‘seeing the impact on my daily life, what would you recommend to allow me to do _________’.
RE Medication requests: I just dealt with this. Another friend of mine with Ehlers-Danlos was put on a certain pain patch and she sang it's praises for it's ability to help cut her pain down. I was just getting established with my own pain management doctor and he was taken aback that I requested the same one until I explained that I had already tried other medications and that she has the same disorder as I do.
i literally cried at the end of this video, the talk on mental health not only touched me but absolutely hit me deep, i haven't had the best of time with my mental health lately and this whole video was just one big cyber hug and it made me feel less alone, even for a minute, that meant a lot.. thanks Jessica. my question is - do you use something like a teleprompter when you do videos with long quotes like in history videos?
It took me close to 11 years to get a diagnosis, and because it’s a diagnosis of exclusion (plus the oh-so-fun medical gaslighting), I definitely still deal with a lot of doubt/invalidating my own symptoms (funny how that happens when your symptoms get invalidated for years 🙄). The online chronic illness community has been so invaluable for me, not only in making me feel less alone, but also in helping me take better care of myself!
Thank you for this. I often catch myself thinking "do I actually have chronic fatigue, or am I just lazy?" and I know it's a product of having so many doctors doing so many tests and then saying "the test results say you're fine" (and I'm sure the eight years of being misdiagnosed and taking the wrong meds didn't help), but it's so nice to know that I'm not alone in that worry. That other people understand.
Wish I'd had a video like this back when I was first going through diagnosis/fight for benefits. This is a fantastic resource for people, thanks for making it!
Me watching this: "Yes, YES, EXACTLY YES!" I will be sending this video to all my friends and family. All of this is incredibly important and helpful, thank you very much, Jessica!
Heads up, this is a long one... I've been trying to get a diagnosis for my health issues since I was a teen... my mom wanted to find out what was wrong asap but we kept being ignored or told we were exaggerating/ making things up. Since about 2007 I have been having worsening symptoms. It used to be where I would be tired more than everyone else after little to no activity. Then I started having bouts of paralysis where I couldnt get off the school bus to go home and had to be carried off my my brother and/or my other family members. Fast forward to 2013 when I was a sophomore in college, I was having more muscle fatigue on a regular basis, my knees would hyperextend while walking to class, I had severe migraines that would last for days on end, and I started having trouble holding a pencil to write or draw. My cognitive function started to suffer and even still I couldn't get answers from doctors. In 2014 I transferred universities and thought I was doing better until I ended up having to go to the hospital for stroke symptoms that they could find no cause for since everything looked "normal". From there I had daily complex migraines for 2 1/2 years that made me walk funny and barely function in general despite me having to go to school and work every day because i had to "suck it up." I ended up being homeless twice since my health made it impossible to keep a job that paid little and only gave 4 to 8 hours weekly. I'd get back on my feet long enough to crash down again harder. In 2018 I finally got a job that was willing to pay well and give me full time hours (3 towns away from home), and my manager was willing to work with me and my mental processing issues and occasional flareups in mobility troubles. A year later she was transferred out and replaced with someone who didnt believe someone my age could have my issues and who tested and pushed my limits daily to the point that I would get to my car and not be able to drive home because paralysis would take over... my customers saw and worried since they saw me stumble and collapse several times. Now I cant even leave my house except for small excursions where I use store scooters and/or a cane to get around. My tourettes is worse since an EMG that was done and paralyzes me by overexerting my muscles. I cant work and I dont qualify for disability without a diagnosis. If not for my boyfriend and bff I would've been homeless a third time several months ago. Sorry for the long comment, I just needed to get this off my chest. I've been crying a lot out of frustration and fear that I'll never know what is going on with my body.
This may be helpful for my US friends trying to get access to pain medication for chronic illness that are having issues with their doctor or currently undiagnosed: Request from your primary care physician to see a pain management specialist. While your primary doctor may be worried about you "drug-seeking", the specialist is trained in taking people seriously and trained specifically in painful conditions. Meaning they can actually tell when people need help and can grant you their services and access to medications if necessary!!! This helped me after years of "well the tests say you are fine, so it must just be because you are stressed and we can't give you any more medication for that"
Just to hear the words "medical gaslighting" felt so validating!! If we really were "fine" we wouldn't be going to the doctor, and I feel like a lot if doctors dont understand how hard it is to even get to them, especially if your illness makes it physically or mentally difficult. I've also been taught to hide my weaknesses so it can be really hard to say all my symptoms, even more so if I'm worried the doctor wont believe me anyway (only for them to not believe me cuz I didnt say the full story oop). I'm now debating if I even want to try getting diagnosed again, so this video was perfect timing. So much love to anyone who's ever had to deal with any of this 💕
For some doctors the "If we really were "fine" we wouldn't be going to the doctor" isn't a valid argument because they think it is the money you want in case of conditions that are subject to get you a disability card. Like that disability pension could make anyone rich :)
I’m a doctor. I also have a couple chronic illnesses (mostly diagnosed, but one that isn’t beyond “yeah something’s wrong but we don’t have a name for it so byeeee!”). I will add under that “your doctor is human,” bit that remember it’s not your doctor’s fault that a test comes back normal. It’s not (most of the time) because they did it wrong or didn’t explain how it works well enough. Sometimes it’s just the wrong test, but ruling things out is important. Yes, the ultrasound I had was completely useless for diagnosing my endometriosis. But if it had shown something else I would have been spared the surgery I had instead. Only blame them if they stop looking, not if their process doesn’t necessarily lead where you want it to go.
What would help is if doctors said something indicating "the test was normal/negative" was the beginning of the conversation and not the end. Like "the test was normal for_____, but here are some other tests we can try or here is what else it could be..."
Really needed this tonight. I've been seeking diagnosis for 5 years now and I have a cardiology follow up appointment tomorrow where I KNOW I'm going to get more of the "you're fine" spiel, or the follow up wouldn't be three months after all the tests. My dad is convinced all of my symptoms are either psychosomatic or because of my diet. Things have just gotten worse and worse and I can't access any support services without a diagnosis and I'm so, so tired. Fingers crossed for tomorrow.
I've had CFS for 10 years, and have just recently been able to get a diagnosis after years of medical gaslighting from so many different doctors who told me the classic "your tests are normal so I guess you're fine!". It's so hard to be persistent in looking for answers when everyone is telling you it's in your head. If it didn't get bad enough that I had to quit my job, I probably would have never gotten a diagnosis.
going to the hospital for several days on tuesday because i suspect having RA (lots of joint pain and stabbing feelings/trouble breathing), and i am terrified. Jessica's content means a lot.
Ask them to also test you for Celiac. It is the most common autoimmune disease in the UK and USA and has a host of symptoms. Most docs refuse to test, because there are no pills for it. But If you have CD, it can effect and affect everything you do. Also, look up polymyalgia rheumatica, osteoarthritis and asthma. Do you ever get rashes? I hope you get a dx fast. If it feels like they are not helping you, keep on them. They get paid well, expect results.
I spent my whole childhood reporting symptom after symptom, sitting out of activities and ending up in the ER because I was in so much pain and couldn't communicate why. I was told time and time again it was growing pains, I was exaggerating, I just needed to be more active. For the past two years, aka as Soon as I had control of my own medical visits, I've been looking for answers. They threw out fibromyalgia, juvenile arthritis, and of course just "needing to lose weight" (despite being at a perfectly average weight) and after a while, I gave up. Your videos made me realize my bendiness was a much larger part of the problem than any of my doctors thought. This past month I started physical therapy, got ring splints to allow me to write again, and yesterday I was finally diagnosed with Hypermobile Spectrum Disorder. I know this is just the beginning, but it's so relieving to have an answer, even if it isn't something that can be "fixed". If it weren't for sharing your own journey I can't imagine how long it would've been before getting this kind of help. Thank you
I started getting migraines (my father had them, but was never officially diagnosed) at 11. They looked, but couldn't find a physical reason so I didn't get treated. What we didn't know then, but it was probably when my food allergies started. I was 22 before I discovered the food allergies. Then I had a serious reaction to my #1 food allergy - corn - and became way more allergic to lots of foods, that was about 8 years later. I suffered for about 18 months before my mother decided to take me to a different allergist. I swear he saved my life. About 5 years later I started having lots more body pain than before. It took discovering a book about fibromyalgia that I went to my doctor. He sent me to a rheumatologist who officially diagnosed me. I now go to a pain clinic and get some of the good meds, but I can't take some of the 'go to' meds because of my corn allergy - in may be considered an 'inactive' ingredient to some, but my body thinks it's an alien invader! Oh, and to let you know how long I suffered, the headaches started in 1965. I got the fibro diagnoses in 2001. I have only been going to the pain clinic for 10 years - I am 67 years old and will be 68 later this year.
My doctor won't even treat my brain injury that I've had for 4yrs. I just wanna get better. There's no doctors here so I can't even switch. She's currently refering me to mental health bc I keep crying while she gaslights me. Like ma'am I can't walk straight
Oh my gosh, what you were saying about having to ignore your mental health essentially because you were battling to get your physical symptoms taken seriously... EXACTLY, woooosh it felt like a snippet from my own life!
Still waiting on a diagnosis of my own since around 2017. Doctors don't want to give me one because a lot of them don't believe it's real. I've been told countless times that everything will get better if I just exercise more and move my body, but I've tried that for years and it hasn't made a difference. One of my doctors has diagnosed me with "having the symptoms" of my pain disorder, but won't give me the actual diagnosis because I'm young and if I exercise more, I might grow out of it, and also because there's no official treatment for it. Spoiler alert: just because I was young when I started having symptoms, I am no longer that young and the symptoms have only gotten worse. Now that I can barely walk without increasing my pain exponentially, hopefully I'll be able to get some improvement. Cheers to all of you going through the same struggles.
every time I watch your videos I catch myself grinning like an idiot at my screen - your positivity is just so infectious. thank you for being such an inspirational ray of sunshine in so many people's lives 💕
As a medial student, this is heartbreaking, and I really appreciate you sharing it. I think it's so important to remember that patients are the experts in their own lives. I'm going to try really hard to be approachable as a physician and really take seriously what I'm being told. Tbh, as one of my professors likes to say, if you listen to your patients well then making a diagnosis often isn't all that difficult since they'll tell you what the problem is. So listening makes our jobs easier, and it's really win-win.
Grey's was emotional enough to watch over the course of 16 years, and you watched it all within the span of a few months. That's...a LOT! Are you okay???
Took 4 years to get a diagnosis....no one seemed to believe me until I was having a hard time walking. Cried from happiness when I finally got diagnosed and could start treatment.
Hello everyone, how are you all? I hope you are doing well. Have a fantastic upcoming weekend and remember that someone out there cares about you and you will always be valid.
I'm so so so happy I found this video! It's like a pep talk I didn't even know I needed. I'm seeing a new cardiologist next week after seeing the same dismissive cardiologist for four years that three of my other specialists have been telling me I need to change. I was scared to see another cardiologist because I was afraid of back tracking and I'm still nervous about it. This video calmed some of that and gave me great ideas for how to approach my future.
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Louder for people in the back: Just because you can't afford either the time or money for diagnosis does _not_ mean your symptoms are not valid!!
& remember even in the NHS, getting second opinions, or getting private treatment to skip waiting lists costs money.
Here in my country people are more afraid of hospital bills than dying. So most don’t get even just checkups for most their lives. Which is also why quack doctors/practice are still thriving.
HONESTLY
thank you.
I have a connective tissue disorder of some sort (undiagnosed but my mom knows she has one too)
& I have symptoms but gaslight myself daily 🙃
And just because your symptoms are due to an underlying condition with no cure, or aren't actually damaging you (you know, beyond pain, fatigue, lack of sleep, lack of work, mental health etc....) doesn't mean they aren't worth treating!!!
I’ll never forget overhearing one of the doctors in a&e telling a nurse that he was certain my stroke-like symptoms were because I must be pregnant, even though I had 5 minutes prior to this told him I definitely wasn’t pregnant. After days of tests in hospital, I was then diagnosed with a neurological condition. The speed at which male doctors disbelieve young female-presenting patients is astounding.
I also had stroke like symptoms for a while and had the same response... same with when I had a gallbladder polyp that hurt like hell and when I was in high school and had a stomach ulcer. They tested me so many times for pregnancy and didnt believe when I told them I wasnt and couldn't have been at those times. I think with the polyp they did 3 pregnancy tests before sending me to get an ultrasound and even then didnt treat me after.
I've had a doctor grill me about potential pregnancy before starting a pregnancy-unsafe drug. At the time I was on the pill, hadn't been sexually active for over a year and was ON MY PERIOD AT THAT MOMENT. For goodness sake I was blasé because the kid would have been 6 months old by then if I had gotten pregnant last time I slept with someone, not because I don't take potential pregnancy seriously!
@@mouseluva yep.
“Is there a possibility you could be pregnant?”
No. Definitely not.
“Maybe we should do a test to be sure”
I really don’t need one, I’m definitely not pregnant.
“But how can you be sure?”
Because I haven’t had sex with someone who has a penis in over 10 years.
“Oh”
Had to have a CT scan for stroke-like symptoms last month and legit said "probs not pregnant but I'd rather take care of me first before a hypothetical foetus" 😂 thankfully the doctors and nurses took me at my word and didn't make me take a pregnancy test.
It's a whole issue. I have partial strokes and seizures as part of my Atypical Complex Chronic Migraine. More so in the really bad migraines, but stroke symptoms in a young person are rarely taken seriously. I almost had a full blown stroke due to a migraine medication reaction, that's when it was finally taken seriously.
Litterally started sobbing at this. Medical gasslighting is too real
Just came back from a doctor trying to medically gaslight me.
No, no, not today, lady. (The doctor)
Don’t let that get to you. Please continue to advocate for yourself. Healthcare professionals are like any friend or any relationships. You won’t be friends with everyone, and you won’t trust everyone you meet and you can take a long time to find the people you trust. Same with a doctor.
Keep searching!
God, there is nothing more soul sucking than going to doctor to doctor and countless appointments knowing that something is wrong and undergoing test after test only for them to tell you that everything is normal, maybe you just need more sleep/a better diet/ maybe it's all in your head. Even when doctors are genuinely nice and understanding, I feel like I'm wasting their time or an idiot and that I'll never feel better and never know why. It doesn't help that I do suffer from sometimes quite serious hypochondria, meaning there is a very serious chance something COULD be all in my head. And it makes me feel guilty to even go and get tested in the first place.
“You’re healthy as a horse!” I’ve heard that so many times. And all my blood work is normal. So I must be healthy. Except I’m not. It’s so discouraging.
But Jessica is a ray of light and love and gives me courage and motivation to keep pushing forward.
I had to get angry at the doctors. When I demanded they do their job, that I was sick of their BS, they finally listened. I told one doc in a very harsh tone. "I am going to die and if you don't find out what is wrong with me, it will be on you" I was leaving and ready to slam the door hard enough for the hinges to come off. She said softly, "come back in, I's going to test you for Celiac and H-piloy". The test came back positive. I learned that I had to be the one to push my doc, even it it meant getting them upset. I have been a strong advocate for myself every since. I go in expecting them to do their job and I won't leave until I am satisfied.
Don't feel guilty, they get paid a LOT of money. You wouldn't pay a house cleaner 20 an hour if they came in and just talked to you and left, would you? Expect them to do their jobs. They get off way too easy.
I just want to say that if you haven't yet, I hope you find a primary care physician that knows you and works with you; someone who does there best to relieve that guilt if you have a question and helps work with you to find what works best for you while validating you and your experience.
It took me 8 years to get a proper diagnosis and by then it had already hurt my body irreversible
I have a doctor right now that's finally being understanding and not dismissive of me and I feel like I'm bothering him and sound like an insane person describing all the things other doctors brushed me of about for YEARS. I'm putting off calling for appointments to not sound like a hypochondriac. It's insane
One tips if you’re not a cis male that I’ve noticed during my medical journey: focus on how the pain/symptoms is effecting your every day life. Example: instead of saying “I have a hard time to fall asleep due to my anxiety” say “the sleeping problem I got bc of my anxiety is effecting my ability to work”.
Thanks Emma love the way that you explained the sleeping problem , I’m taking note.x💕🏴
Thats a good one. Older women tell me they always talked about their health in terms of “how their husbands complain they can no longer do X” and ALWAYS got treated way better. Its maddening that doct id w fake husbands more than the real person in front of them but its a strategy if you need it.
My son was extremely far sighted when he was a baby. It made him seem to have amblyopia when he was tired. The doctor told me babies are "just like that". I had to take my husband to the next appointment so the doctor would actually test my baby's eyesight! Ugh. My husband called him on it, but I doubt it changed the doctor at all.
Even if you are cis male, presenting your symptoms in an objective and quantifiable way like that really helps doctors and other people understand the severity of what you're dealing with. Subjective experiences of what pain feels like are different for everyone, but describing how it interferes with your daily life is something the other person can put into context of their lived experience
I’ve been keeping this notes ever since I saw this advice in one of Jessica’s older vids. Perhaps it was your comment as well?
It took me over 5 years to get my diagnosis because doctors didn’t want to run a test, that when finally done, diagnosed me.
My husband was told over 5 years they had no idea what was going on with him, and maybe it was psychosomatic. It was Lung cancer.
We are both learning how to become better advocates for ourselves, and for each other. To any of you still on your medical journeys, my thoughts are with you!
That is criminal!
@@michellem4287 it’s been an extremely frustrating journey for both of us, for certain.
Luckily there was a doctor for both both of us (my husband especially) who refused to give up on finding answers.
Wouldn't a chest x ray or ct have shown lung cancer? They wouln't even do that?
@@stephenienoel106 No, because his symptoms appeared to be neurological. So they did a bunch of tests and tried medications to try and find out if it was coming from his nerves.
How they eventually found it, was he had an bad allergic reaction to some antibiotics they were also giving him, to see if that would help with another issue, his inflamed lymph-node.
At the hospital when they were dealing with his allergic reaction, they did a chest x-ray to make sure his lungs were fine (since the reaction had affected his breathing) and that’s when they found the tumor.
@@Alex-uy3ph wow. Thats crazy. I wonder why lung cancer would cause neuro like issues.... is he ok now? Are you?
I’ve been sick for 31 years but have been actively seeking a diagnosis for 10 years. During those 10 years I received no treatment while My health continued to decline and I encountered a lot of medical gaslighting, trauma, and outright cruelty.
I was told over and over that I was crazy, attention or drug seeking, lying, and most often...experiencing a psychosomatic issue.
However, as of yesterday, I finally received my 3 primary diagnoses! Ehlers Danlos Syndrome, POTS, and MCAS.
I am now being prescribed much needed medications and therapies. I have access to assistance and accommodations. And the symptoms that aren’t covered by my current diagnoses are now being taken seriously and comorbid conditions are being considered.
I definitely agree with all of these tips. Be your own advocate, keep very good records and symptoms journals, don’t stay with a doctor who is unhelpful or straight up abusive, stand up for yourself, and educate yourself on your symptoms and experiences.
So sad we have such similar journeys...the process is cruel, exhausting and dehumanizing!
I have a friend with Ehlers Danlos Syndrome. Not fun! I hope your meds help out!
Im glad you're finally getting somewhere with your diagnosis & medications. Wishing you well for your future xxx
I am so happy for you for finally getting a diagnosis. I am currently starting the journey to diagnosis after 22 years of no treatment for my health issues. I hope things are going well for you now that you are receiving proper care and I hope that I can as well one day.
Oh gosh EDS must be so difficult to have and actually get diagnosed with. It's one of those diagnoses that quacks and people in the "natural health" world (that are actually just after making you afraid of everything and then selling you things to "fix" you) says that practically everyone has! It would make me so angry to have a portion of the population "cry wolf" like that, if you will; I can only imagine how much easier it would be to get diagnosed with it if there weren't that "oh you're one of THEM" stigma if you ask about it.
As an able-bodied medical student this is such an important watch to ensure no one with chronic illnesses go dismissed
When remembering "doctors are human" remember that means:
"Doctors can be bad at their job"
My aunt should lose her license
Exactly!! Just because someone is a doctor does NOT mean they are a valid authority!!
Gosh is your aunt my GP. Seriously stuck with a bad one that botched her job so often that it's basically a weird thing that I'm still alive
@@flyfamille5671 I still don't know if I have ovarian cysts because she told me there was no test for that when I asked
@@GaasubaMeskhenet wtf??? a simple ultrasound can check for that easily....
@@GaasubaMeskhenet You need an ultrasound for that - actually two - external uterus and intravaginal. I've been through the process and fortunately I don't have cysts, but that is the test. Depending on where you are it can be expensive. See if you can seek a specialist to get the testing done. Just because your GP doesn't know about this doesn't mean it doesn't exist. You need to be listened to.
The "all in your head" explanation is ironically comical to me. I have anxiety, clinical depression, ADD and brain damage. I have a dark sense of humor. Thankfully due to my obsession with the sciences I actually do know what most medical terms are, and if I don't my doctors will happily explain them.
Same,I have a neurological condition where my skull isn't big enough for my brain and I've accidentally laughed at doctor's when they told me my symptoms are 'all in my head' many times 😂 they did not think it was funny oops
I have severe anxiety, clinical depression, and ADD as well. The anxiety gave me IBS, and also being lactose intolerant, these do not merge well. I have slight brain damage which I was told it caused slight low muscle tone which I'm sure does not help my IBS. I also suffer from nerve sensory issues. I can feel, taste, and hear everything to an extreme. This means that my body reacts to pain quite quickly, which sucks cause I feel the pain that most people usually can't. But I can taste about every ingredient in a dish.....but I can also taste phosphates in the water. I am an extremely light sleeper because of this
I don't think I will ever forget that hospital doctor that looked at my MRI and was like, "This thingy here is odd, but you're just imagining everything. :)" and me walking out the hospital crying like a baby. And now I'm terrified of ever going there again. Fun, fun.
I love you babes, that's so unfair and you don't ever have to, I think if you ever plan to go to another place you can sign an release of information so that they can look at the imaging to tell you that hey, something *is* up. I hope that makes sense, though I would talk to the person who is helping to schedule the appointment for you, another thing that helps me, is getting out of their bubble of control, so doing appointments not in person if at all possible and in a safe space, maybe just calling it a consultation to look at previous diagnostic imaging. I know this doesn't fix everything, but..yeah..I know this stuff sucks, like really really bad, @ my old terrifying neruologist. Even just saying thay is triggering. You are loved. Take care of you ❤
I am so sorry that you had to go through that. Keep pushing though!!
The doctors are absolute psychopaths. I wish there would be just a testing centers for everyone without idiotic comments of doctors.
As a child in the 60s : asthma was something I did to myself to get attention, allergies didn't exist and I was just "showing off" and when the school were told I had a peanut allergy, my Mum was told that I should " just take the peanuts out". And of course my parents were just being over protective and paranoid.
I've been there, Anne. When I was a kid, I had a problem where I would just stop breathing. Parents treated it as if it were nothing. One time when I was in Junior High, it happened while waiting in line to go into a museum. The person behind us told my parents something was wrong with me -- that I was turning green from not being able to catch my breath. Their reaction? "Kathy just stopped breathing again. She'll be fine." A decade later, a doctor diagnosed me with asthma. Mom asked me when he thought it had started, because she didn't remember me ever having an asthma attack!
Is it any wonder we doubt that our symptoms are real? Or that it would matter if we reported them? (I still struggle with that one....)
I hope, Anne, that your allergies and asthma are under control and you are able to get help for them!
@@callkathy2010 thank you. All under control now. I think it was well into the 19802 though before I heard about asthma being taken seriously.. Its no wonder so many children didn't make it to their 5th birthday. Hope all is well with you. Stay safe.
Let me guess, you live in the U.S.?
@@dianapovero7319 me, no. Grew up in the UK. Now living in N.Z.
@@annesamuel7096 I got the same responses living here in California back then.
Lovelies please remember that just because you may have some psychosomatic symptoms that doesn't mean you have ONLY psychosomatic symptoms, treating your body means treating your physical and mental health issues.
Both types of issues are valid, if you don't feel right something is wrong. No matter what.
thank you, I needed to hear that today (as a person who suffers with mental + physical chronic illnesses, and who often doesn't know how to separate the two, and who does beat myself up a lot about it)
Yes, it's not easy to figure out which is which. Am I stressed out or did I eat the wrong thing? Sometimes I don't know!
Oh how cruely true. I pushed myself to work through 2 years of getting sick more often and often. In the end I barely ever felt realy healthy and no one could tell me why I get sick all the time. Then I spiraled into a bad episode of depression and anxiety and had to quit my job. Tadaa since I quit my job I have not falen ill for months. Wich is a small miracle. It seems my body was just screaming - STOP - and when I did not listen it made me stop x)
+
Yeah! I developed health anxiety only after years of medical gaslighting
I’m still building up the courage to email the neurologist who told me to stop journalling and focusing so much on my symptoms, and they would just go away. He told me my pain and other symptoms were psychosomatic, so by just relaxing and ignoring the pain, it would go away on its own 🙄
Then my psychiatrist, following the neurologist’s “diagnosis”, tried to put me on medications that I didn’t need to treat the “psychosomatic” symptoms. He also told me that with mental illness sometimes comes unexplained pain, and accepting that it wasn’t physical, and start ignoring it, would help it go away.
Basically: as previously established, you’ve got the crazy. Here’s some mood stabilizers, now get out of my office.
Thank God I chose not to use their advice, because after several more months of pain, I got in to see a physiotherapist and was almost immediately diagnosed with a treatable physical condition.
Anyway, there’s a big part of me that wants to email that neurologist to tell him how wrong he was about my condition. The amount of stress and pain I went on to experience because he didn’t believe me is unacceptable. It bothers me to no end he may be giving that same advice to other people with treatable pain.
As an American, I second Jessica's warning to not ask for medication in the US prior to getting a diagnosis, especially as a woman. Both my mother and grandmother have chronic nerve pain and have been accused at various points of faking their condition in order to access "unnecessary" medication. Neither of them was provided with medication until after they received a diagnosis, and that required visiting multiple doctors until they found one who listened and believed their pain was real. I will also add that my girlfriend (who also has EDS) went undiagnosed for years and received no medication, as her doctors blamed her joint pain on being overweight. It wasn't until she lost a significant amount of weight that she was finally diagnosed and was able to access medication and physical therapy.
What happened to you girlfriend happened to me too! I got diagnosed with EDS a few days ago after years of doctors telling me A) I need to lose weight and my joints will feel better B) it’s psychosomatic and C) my tests indicate no problems so I’m actually perfectly healthy!! (Never mind that I’ve had chronic pain since my childhood lol) the American Medical system is not made to support and diagnose chronic illness and pain, especially with the way our insurance works
Whenever my sister goes to an appointment about her conditions she asks the doctor either let her record the full conversation or to give her a plain English summary of the appointment (also recorded) - with a focus on the actions she needs to take. We've never had a doctor or nurse turn us down yet (our mother had similar issues) and it really helps us provide her with the extra support she needs with her memory and continuity of support when different family members are doing the hand holding (she's a very good self advocate).
While getting my diagnosis for my secondary condition I asked for a a copy of the records and only received one piece of the cause of my condition.
I’m autistic and watching how you talk so openly about your disabilities inspires me to accept my own :)
Thankyou
Hey friend, I'm in my 30s and newly diagnosed. We got this!
Same
On a high part of the spectrum, always thought I was...I finally got it in March (along with a much better ADHD treatment than in the past) after advocating and researching who could help me out. You are your best advocate to know what's wrong with you.
hi! i’m autistic and have ADHD too, we rock!! honestly we’re the coolest people :’)
@@MissDanaSophia ah that’s so nice !
Literally every single therapy session starts with an uncomfortable silence after which my therapist will reliably ask "How are you?" and about 95% of the time I start by saying "oookaay" and then proceed to spend an entire hour talking about some of the things I've been struggling with in the 2 weeks since our last appointment. In case you're wondering, 5% is when I say "Surprisingly well right now, although..." or something along those lines.
That sounds great. That to me is massive progress and you should be proud. I spent so long saying I was "fine" or "okay" etc when I was suffering because I was sure no one wanted to know or cared. The biggest difference in my life was when I started being honest, even hesitantly. You really should be proud 👏☺
ahhh yes I am all too familiar with the unnecessarily long ‘oooookayyyyy’ or ‘weeeeeeell...’
hEDS here! I was medically gaslit for a decade before I got my diagnosis. Now I am one of the very few openly chronically ill people who is "out" about my disability in my field. The more we talk about it and normalize discussions like this, the better off chronically ill folks are in future as they pursue diagnosis (or don't), move through the world, ask for access needs being met and more.
Thank you, thank you, THANK YOU for the hard work you put into this.
If someone is interested in the story I just want to point out that Robin has a video on this topic on her channel. Her channel covers disabilities, LGBTQ+, opera, cats and tea. Have a look! :)
@@emmynoether9540 Oh, thank you so much! :)
Have a doctor friend who got diagnosed while getting their doctorate, we need more representation in healthcare and I appreciate you! Will check out channel.
the feeling of being sat in your doctor's office and saying "I'm fine actually, I'm doing great" when you're obviously not doing great at all is too relatable
That's me every appointment. :(
That's classic for any with chronic illness and/or chronic pain patients. We get in the habit of just telling people that we're fine because most people can't handle the true answers.
@@kfemme68 I totally agree. Also, 'fine' for me often means 'It's not the worst it's ever been. It's just as bad as usually, I can somehow cope with it.' Doctors (and everyone else) interpret it as 'I have no problems or symptoms' though. So while I still say I'm fine out of reflex I try to then specifiy that I mean I am in pain and all but am mostly able to handle my day to day chores (which are already altered to me not being able to do some things and needing to rest often) at the moment.
The bit where you’re talking about organizing medical letters and how your memories about it work is SO relatable. I have ADHD and possibly autism, so my brain just files information in weird spots sometimes or saves the least helpful details 😂
In my family we call this "strangely observant" I notice odd specific details I can recall months later, but don't notice or remember big obvious stuff
I'm able-bodied but watching this in hopes of understanding people's experiences better! (And maybe help someone in the future)
Bless you. I know it is very difficult for friends, spouse and family to fully understand how it feels to live in my body. 🤗
Maybe even yourself in the future 😅
@@MxDiagnosis I'm a very cautious person who stays in their house most of the time and I've done a genetic test that said that there's nothing there, so hopefully there won't be any surprises! But just in case, yes.
Same!
I hope it helped!
I'm 22 and have just been diagnosed with arthritis. I've already had waaay too many people questioning the diagnosis because "Isn't this an old person disease? You can't possibly have it this young." and it is so tiring to be invalidated constantly.
The pain has been with me for some time, but I ignored it for a while, dismissing it, thinking "everybody feels pain in their hands, right?". I started being vocal about my pain to people around after having the diagnosis, now I've heard something like "do you think that maybe some of this pain could be psychological? You've never complained about it before". Now I'm struggling to make them understand what I feel and how they can help.
I've had arthritis in my knee since I was 10 years old. It's more common in older people but young people can have it too! Thankfully I've had support, but the best advice I can give is just be clear with what you need. Sending support!
“You’re too young “ in some variety is something I’ve gotten every time I’ve brought up my arthritis diagnosis (got it when I was 3) and it is so tiring
I got diagnosed with Psoriatic Arthritis at 21 so you are not alone! Ive heard all those ignorant comments before too sadly and I just tell them “well clearly not” and then don’t explain further.
Thank you for the support! Your comments make me feel less alone.
I'm going to be beginning my own diagnosis journey for probable arthritis. I got arthritis in my knee after damaging and then losing my meniscus, and the pain I have with that reminds me of basically every other pain and stiffness etc I feel every day. I'm hoping that fact and this video will help me get my diagnosis
If it wasn't for you talking about chronic illness and disabilities online, I'd probably still be gaslit into believing it was 'just hormonale imbalance' or depression and driving myself into the ground.
But you talked about ME/CFS some years ago and after some reading, I brought my suspicion to my doctor. Got sent to a specialist and got diagnosed with ME.
I can never thank you enough for making the videos you do. It changed my life ❤️
How does a specialist diagnose ME/ CFS?
@@roses_are_rosie8412 in my experience it takes about 6 months to get the diagnosis, because they have to rule out every other diagnosis AND u have to prove that uve had the illness for that long!
As far as I know it isnt a diagnosis of exclusion anymore in the states (I think I read it on a ME/CFS awareness website and confirmed it on the CDC website). I have been asking the same if my doctor for over a year now and she still keeps telling me she cant be sure despite thousands of dollars of tests and 2 years trying to figure out what is wrong with my body since it is only getting worse... I tried seeking ho from other doctors in the past and had worse treatment, but it is so frustrating. I fit the bill for ME/CFS and FND almost to a T but when I ask if something could be the issue doctors try to say I'm a hypochondriac... I hate doctors and going to doctors :(
@@roses_are_rosie8412 First, I has a ton of blood work done, then a brain scan, to exclude everything else. Then I was actually referred to a psychiatrist who specialised in it, and we talked through my symptoms, medical history and daily life/activity level. Took about 6 months to get the diagnosis.
Sadly, his department was closed down and I briefly got transferred to a center that do PACE for various ailments. Now I'm sort of in limbo and the only real practicing specialist in the field is private and very expensive.
@@DiannaAngela best of luck with finding another good dr!
I have an eating disorder that was only recognized a few years ago, ARFID. Hearing that it wasn't just 'in my head' was so cathartic!
its so weird because they just kinda told me ''idk what you have bro but your pain is definetly chronic'' and then kinda dropped me. after 2 years of going to a lot of doctors, lots of all kinds of doctors, too. they cant figure it out and except to accept that its just some chronic pain and take strong pain meds. and im 17 so i dont know where to go at this point. im in paralising pain
100% relate to the f@&king yoga
As someone with ADHD, my brain works in a very similar fashion to 5:50
My Son has it and I was hysterical with laughter because It was like explaining him to a T!
Same
THIS
Exactly!! lol
Yes!
I've never had to deal with a chronic illness, but I grew up with mother who is a Christian Scientist. Any medical issue was bombarded with questions like "What's the emotional cause of your migraine?" (lol yes lets talk about emotional trauma and pray about it while I can't see straight) "Is this stomach ache because you got into a fight with your sister?" "Oh you're feeling depressed? Count your blessings and get glad again!" There is a reason I don't talk to my mom about anything health related (mental or physical) anymore and I have a visceral reaction when she asks about it.
Had an upbringing where any and all symptoms were prayed over instead of treated. I relate so freaking hard.
When you got to the part about doctors outright telling you that you are lying, I began to quietly sob in my recliner.
lol a doctor tried to tell me my ibs was anxiety like. ma'am. im in my 4th year of psych. i Know whats anxiety.
also every "consider losing weight to solve every single problem ever!!!" makes another finger on the monkey paw curl
This is what my husband's family did to him for 10 years. They also downplayed his issues to doctors so the docs didn't have a chance of thinking it was anything but anxiety. He has Crohn's Disease. The fact that he didn't lose part of his intestine during that period is due to sheer luck. And the best part? Now he HAS anxiety from medical neglect.
Omgsh yes. Just loos the wirght. For me loosing 20 kilos made my chronic pain much worse. Still a person in my near family told me it was just loosing more that would help. That my brain needed to adjust.. Seriously I'm so tired of everyone believing that all my health issues is because I'm overweight.. Besides my Dr. He is absolutely amazing thank the higher powers.
Also you know I have a torn ligament in my shoulder and a bad neck.. Must be because I'm overweight..
I have both IBS and ulcerative colitis, which made the diagnosis of ulcerative colitis more difficult. The first time I know I had ulcerative colitis symptoms, my doctor told me I had a stomach virus. Then things got worse and I went to the GI doctor who diagnosed my UC. I guess I can't completely fault the first doctor since the more severe symptoms did not show up until after she gave the wrong diagnosis.
We had a family friend who was chief of psychiatry at several large national hospitals, and sat in the national board of health. They seriously told HER that "have you considered maybe it's just stress?" 0v0;
To which she whipped out her license, smacked it so hard into the table that it skidded across and yelled bloody murder, because she _did not_ finally get to a specialist only to have him amateur psychology her.
Oh, yes. It was MS. She was in a wheelchair within fewer years than it took them to effing look at her brain and diagnose it.
Jessica as someone who's been having a 16 month diognosis during covid I am in love with you for this
I couldn't agree more I started my journey at March during the start of the pandemic so it's really useful to have these sort of tips and they still haven't found out what I had so I have to go back to square one so that's fun
Chloe C. Me too! It’s been so hard to do this during Covid! You are not alone!
Same here! Started in June 2021. Still finding a diagnosis, best of luck to everyone here!
Same here. Over 2 years now, still being told all my tests are normal and there's nothing wrong with me.
@@sofiavoudou9021 "tests are normal, so nothing must be wrong!" to the patient who came in because something is clearly very wrong
Every doctor I’ve gone to about my chronic pain has said things along the lines of “I’ve never dealt with this before...” “You’re too young.” “The only name for chronic pain I’ve heard of is Fibromyalgia, but you don’t have that.” Even when I drove multiple hours to see a neurologist at the best hospital in my state. And, yes, I live in the USA, so my parents have paid a LOT of money to get told I had chronic pain. I diagnosed myself with chronic pain in 5th grade!
For my fellow US folks, here's what I found helps with talking to doctors about pain. Sorry y'all, it's a thesis. But just in case it helps.
1. First, know that most of the time, when a doctor is side-eyeing you because you need pain-relief, it's because they're scared.
The DEA - the Drug Enforcement Agency - monitors how much pain medication doctors prescribe, how often they see you, how often patients change doses, how many scripts they write, which pharmacies they send to, etc. And if they don't like what they see, they'll interfere in their practice, tell them to change *patient care*, or medications, or how many scripts/month...or they can lose their prescribing abilities.
While it's definitely prejudicial - "Hey, I'm gonna make a snap judgment that you're drug-seeking or drug dealing based on race, age, sex and ability" - it's not all motivated by _pure_ racism/ageism/sexism/ableism/etc. There's a lot of doctors that want to help, but they're anxious or don't think it's worth it.
1a. After the FDA and CDC released some _recommendations_ for how to prescribe pain medications, some states took it as gospel and made it _against the law_ for doctors to prescribe over a certain dose. Other states made another hoop for doctors to jump through, where they have to document why they went over that dosage. So they literally can't prescribe what works for you, or are overwhelmed by the State *and* DEA document requirements.
BTW, this almost become national law a couple of years ago, until disability advocates stopped it in committee.
2. So, given this, never ask for specific pain meds. I know, it sucks. You know which ones work. But that is red flag #1 of drug-seeking, the whole reason doctors are getting regulated this hard, so it freaks them out.
So instead, you can bring in a list of all medications you've tried, along with side-effects and efficacy info for you. "This one worked well, but it made me sleep all day", "This one made me a little groggy, but the sharp pain in my back was bearable". That kind of thing.
2a. If possible, get a genetic test (ex. GeneSight) that shows which pain medications your body breaks down the best. It helps you both know maybe why one works better than another, or which need dose adjustments. And it SERIOUSLY helps with insurance companies that try to tell you which pain meds to take.
3. Bring in a pain scale with descriptors on it, and go over it with your doctor together. Like, printed out or on your phone, physically viewing it together, lol.
Most of us have learned never to say "11" - again, those doctor side-eyes. But since pain is subjective, it really may be your 11, and we are desperate to be heard. Problem is, doctors have a scale _they've_ been taught. And for them, a "10" means the patient is unconscious from the pain. It's reserved for things like devastating car accidents.
Pain also causes physiological responses, like increased heart rate and blood pressure. So if you come in, normal heart rate and blood pressure, speaking in normal tones and say it's an "11", they think "Liar" or "Malingerer", not "This must be really bad for them". So, we have to accommodate the doctors and use their pain scale terms.
So, for me, I learned that despite being in pain all the time, if I'm able to distract from it, that means I'm at a 4-5. Once I can't distract and nothing else helps (medication, ice, heat, stretches, shower, sit, stand, lay-down), I'm up to 6. My best days are a 3 (ooo, that's bliss) and my worst was an 8, where the pain made me puke. But I have never, ever hit a 10 on their scale.
Just sharing that part in case it helps you understand the kind of range doctors are looking at. That's why I say have that pain scale ready, so you both know what you're describing.
If they still won't believe you, or if a doctor thinks a 5 "isn't that bad", or are dismissive in any way, if possible at all, please find another provider. They aren't gonna believe you anyway, so if you can help it, save yourself the crazy-making gaslighting.
Could you please also make a video (if you haven’t already) on your favorite products for chronically ill/disabled people? Obviously some would be disability specific but others (such as favourite heating pad or favorite pain relief device) would be applicable to most people.
That last part really hit me. I'm not trying to get a diagnosis for a chronic illness, but I'm trans and currently in the process of getting HRT (Testosterone). So essentially, I'm trying to get diagnosed with "trans". I was very recently told that my case is very "untypical" and the process was stopped because of that. I wasn't told, I'm not trans, but it's still a major setback and shock in my eyes. It honestly brought up a lot of self doubt(which is essential to the process I'm being told, but still) the reminder that just because you arent diagnosed yet, it doesn't mean you do not have the thing you think you have is really helpful and meaningful to me right now. If you happen to read this: thank you, Jessica, for being so helpful, kind and uplifting.
@@findingagain Thank you so much. I wish you all the best for your journey too.
Don't leave them alone! You get that HRT, don't let them leave it by the side when you know you should have the form of it that suits you.
i am currently in the process of getting diagnosed with what i believe to be Chronic Fatigue Syndrome and this video made me feel so understood, i'm actually crying while writing this :') being gaslit or simply dismissed not only by doctors but also by the people who are supposed to be my immediate support system was and still is an incredibly disheartening feeling and sometimes i feel so hopeless and alone because I KNOW there is something wrong with me and just because it's not showing up on paper it doesn't mean it's not there... this video made me (and i'm sure many others too) feel so heard so thank you, Jessica
*big hugs to you*
I am really sorry you feel this way. I have been diagnosed with CFS for more than 10 years now and if you need any help gathering resources or checking your symptoms and making sure they track (or anything else really), don't hesitate to reach out to me.
Good luck! Doctors still won't listen to me, haha. I hope you're doing okay and remember you're valid!
A point, for really anyone, that was made here..."you are never too old to have someone hold your hand"...I am terrified of dental surgery, and being put under...I am in my 30's and still asked my dad to come with me. Its ok to have someone you trust when you are doing anything medical, I repeat...ITS OK, you are not less of an adult or a person, or weak for that matter.
Actually had a doctor tell me my migraines were all in my head. 🤬 am getting a diagnosis done for joint pain (chronic lifelong) at 62. Will let you know. Thank you so much for all you do.
“Your migraines are all in your head” well no duh, where else would you feel them 😂 hope you get a diagnosis soon though!
@@eliontheinternet3298 😊
@lilipop draws blessings.
@lilipop draws omg i’ve had a constant headache for a year and half and the consultant threw a migraine diagnosis at me even though i suffer from muscle pain. i’m having to wait for a referral to a second neurologist now for a second opinion. hope all is well x
@lilipop draws I had migraines my whole life and had occasional breaking out of rashes. It took years of pain and suffering to get a dx of Polymyalgia rheumatica (PMR), and now I have freedom from migraines. I think of all those headache pills I took . . .ugh I could have had treatment years earlier, but there are too many lazy/gaslighting, doctors. Also, if you have not yet been tested for it also, ask to get tested for Celiac. So many people I know had headaches caused by celiac. I'd want to know the cause of the headache, not just get treatment for it. Good luck.
My father-in-law always said, "doctors are practicing." That was so freeing when we were trying to find my diagnosis. Any time I meet with a new doctor, or something new is happening, I bring along a family member...usually my wife. I also attend others' important doctor appointments for support.
I’m beginning my journey to try and get a diagnosis after my sister encouraged me and told me that I don’t have to just sit there and suffer, and that maybe its not normal to hurt all over all the time for the past 10 years. she’s honestly the first person whos told me that I didnt just have to deal with my pain and that I deserve to try to figure out whats wrong and treat it. thank you for this video. I need to remember to trust myself & advocate for myself
As a future doctor, thank you for sharing your experience. I am sorry you have gone through so many problems in the medical system. Your experience with your chronic illness is very interesting and educational to me....I hope your videos will help me do better than the other MDs :)
Not an illness, but I have my first autism discussion with a doctor next week and this video is well timed to say the least. I've heard a lot of horror stories from women trying to get a diagnosis. I needed this
good luck! I'm in my autism diagnosis journey too. If you can, ask for a female doctor mine is very patient and understanding.
I ended up taking my partner as an advocate (and support, and to help me remember) to my diagnostic assessment. If you have a good support I'd recommend bringing them along, or getting them to help you write out your notes beforehand if you can't take them (having lists of all of my "odd" behaviours from childhood to adulthood was what really pushed the psych from not-sure to diagnosis). Good luck!!
And if your doctor says you're wrong, go and seek a second opinion!!
@@helenm1085 @Alex thank you both for your advice! I'm definitely making sure to have my notes ready (it's this week 😬)
Hope all has gone well for you!
As someone who's been told it's in my head for 18 years, many, many doctors and just being released from the ED for the 5th time in 6 months with "we don't know what's wrong" I really terribly needed this video. Thank you so much Jessica!!!
The dislikes are all the doctors we’ve been to that asked “if it was really that bad” and prescribed Advil 👍
I just got diagnosed with ASD and CFS/ME at around the same time so it’s been hard coming to terms with two pretty large, life altering diagnosis’ :^} but I’m slowly becoming a more authentic version of myself which is lovely! Tysm for this 💌
Same within six months of each other although both took a long time to be diagnosed
Doc kept saying I had Fibromyalgia, lupus, and Rheumatoid arthritis. Instead it was Celiac, polymyalgia caused horrible headache when I used my arms, avascular necrosis (bone death)and more. Now I am needing a wheelchair and need a bilateral hip replacement and my teeth are breaking and falling out. I kept telling them my symptoms didn't match what they dx'd me with, so I kept looking for new docs. Finally found some in a teaching hospital and forced them to keep looking until I was satisficed with the dx. It took 60 yrs to find the right team of doctors. Frustrating experience
@@cbryce9243 I'm having a similar experience. Diagnosed with fibro and I keep saying docs the symptoms don't match what others with fibro seem to be experiencing and they just think I'm saying this because I don't think fibro is a real disease and lecture me before sending me home.
It's good to hear that you found the right team of doctors. I'm really glad for you. But it's such a shame it took so long and no one should have to go through this!
I didn't come here to cry, but here I am, crying.
I've been treated for depression and anxiety for over 8 years now but no one is willing to put their name on a bit of paper for me for official stuff. It's easier now I have an autism diagnosis, but man was it a pain in the ass before that getting accommodations starting uni for a mental illness I DEFINITELY have without someone being willing to sign on the dotted line. It's not even like I have an uncommon condition! So many NHS professionals will say they don't have the training or it's someone else's job to make the call and be ever so kind about their hands being tied by bureaucracy but damnit NHS why is it easier to get a cocktail of crazy meds than a bit of paper saying why I need them?!
Best of luck for all fellow spoonies hunting for the bit of paper that will make their life easier
Because psychiatrists are heavily funded by pharmaceutical co. Diagnose to medicalise ☹️
I do not have a chronic illness, (though I do have a speech impediment so I guess I do have a disability) but hearing you talk about your disabilities so openly has changed my view on chronic illness and disability significantly this past year or so, and I will forever be grateful to you for opening my mind and showing me an entirely different worldview than I've had the (displeasure) to experience at home. Thank you so much for that. Thank you for inspiring other people with disabilities or chronic illnesses who watch your videos to share their own experiences, knowing that there are people out there who will listen to and support them. Thank you for being such a positive influence in *my* life. You're a wonderful and awesome human being, and I wish you all the best. ❤❤❤❤
Thank you so much for this video 😔💜 it took me 20 years to get a diagnosis for endometriosis. One (male) doctor even told me women tended to be paranoid thinking we had endo, and once a nurse looked at me after being brought it by ambulance and asked the paramedics why they’d “wasted” an ambulance on me. Sighs. It’s one of the hardest battles I’ve ever fought (and still fighting...)
I once had a doctor suggest that maybe my physical symptoms were “just” a physical manifestation of trauma from potentially being molested as a child. I was NEVER molested as a child but that was his best assumption since my symptoms started around the age of 8. That appointment was so traumatizing, I left on tears.
Jessica, you really are doing an amazing job in educating us! I’m so glad I found your channel. You broadened my horizon and helped me to have a better understanding of chronic illness and disabilities. Thanks to you I started learning sign language again ♥️ much love from Germany!
I'm adding to that, love from Berlin.
@@emmynoether9540 Ditto ❤️
I got a diagnosis but still cant find a dr that wants to treat me. Ive been trying to deal with it for 8 years since by myself. This community means the world to me
On the mental health front having a supportive psychiatrist who can verify to other doctors that your symptoms are physical and not a product of mental illness while also looking after your mental health to help make sure you are only having to deal with your physical symptoms makes a huge difference. That piece of paper saying your depression is reactionary to your illness not the other way around is essential to being taken seriously.
I was misdiagnosed for twelve years and the previous treatment undoubtedly made me worse 😔
Almost three decades of living, almost a decade with depression, almost 4 years with chronic pain and horribly declining physical and mental health, almost 2 years of actively trying to fight my way to somehow get a diagnoses and help... and some months since almost giving up everything... how is it that it took this long for me to hear the words "You matter"...
thank you, Jessica.
i have gastroparesis suspected heds, as well as pots.
i got sick 2 years ago, and saw three different doctors, all telling me i was doing it to myself and it was good i had lost weight (60 pounds in 3 months).
i was finally diagnosed this year. i’m now starting a liquid diet to hopefully avoid tube feedings. the biggest advocate is yourself 💚
I'm getting diagnosed with Cushing's a disease, a rare disease, after many years of struggling and being misdiagnosed and told I was crazy and had psychiatric admissions (this disease also causes depression, panic attack, insomnia etc).
Thank you so much for this video. I've met so many doctors who told me I am perfectly normal because I achieved important results in my life (a degree, driving licence etc). They always thought I was just being dramatic, they now think a brain tumor caused Cushing's disease and caused all of this. It lead also to me having osteporosis at 20 and a spinal fracture.
Thank you again for this video, your words give me hope and you look like a super kind person!
Hugs to anyone who's struggling with chronic and rare diseases in the comments :)
Having a chronic illness that manifests as both "ew, what is that?" and "why can't you walk/climb/do this thing faster?" is a nightmare. Luckily I moved after my diagnosis, and when people asked, could just be, "oh yeah. my body's all fucked up. I'm just like you, just wonky in this one weird way most people don't get." My coworkers have largely been, "oh. That sucks. Let me know if you need help, ok?"
But I understand how wonderful my coworkers are, and how privileged I am to have a job that brings in supportive and awesome people to work around me. After a decade (in the past) of fighting through doctors, I finally found one that was like, "you know they have drugs now for that?" and got me a prescription, and my quality of life increased SO SO SO SO SO SO SOSOOOOOOO much! Now I know to just tell new doctors: "I have X. I like drug Z. It has been effective for me, and has solved symptom A, B, and C. Let's get me some Z, if you don't have any concerns." Usually it's just, "yeah, that's 100% what I would say. Let's get some bloodwork done so we can get this going." Occasionally it's "damn straight. Prescription's submitted, you should have it in two days, and it should last a season or so."
Love and Peace to you all!
I've been dealing with doctors who haven't found anything wrong with me despite having chronic back pain for about 23 years...and I've finally found a doctor who's taking my pain seriously and I cannot even begin to tell you how relieved I was.
I've been really looking forward to this ever since it was announced! I've been having this 3 year ongoing battle with doctors because no-one will take me seriously. I'm in pain 24/7, somewhere, somehow! I'm weak all the time, sometimes I can barely get myself out of bed because of the pain I wake up with in the mornings. I've done blood tests, nerve conduction tests, x-rays, seen a physiotherapist, ruled out arthritis, ruled out muscle sprain. Every single doctor keeps dismissing my pain, first it was just growing pains, then anxiety pains, and then it was autistic pains, and then it dyspraxic pains. With every doctor that dismisses me, the voice in my head keeps getting louder and more persistent because I'm getting tired with this pain and no answer, no access to treatment for it. I'm so passionate about neurodiversity, and I always advocate for and validate those who self-diagnose neurodiversity. And yet I've been so apprehensive to self-disagnose myself, I've been apphrensive to questions the doctors or be more forceful with them. I haven't seen a doctor in a while, because I've been so beaten down and exasperated, but this time I plan on marching into that doctor's office with my diary entries and all the research I've done, I need to be taken be taken seriously and I plan on telling him I truly believe in my BONES that I have fibromyalgia and how I identify with so many of the symptoms. But I'm also fucking terrified lmao
Hey! It's gonna be alright, people in this comment section are rooting for you 💖
You can do it! If you xan, bring someone you trust with you who can attest for your symptoms, in case the dr needs convincing :)
I pray that you get the diagnosis and help you need ❤️
Good luck! I too found it helpful to write down exhaustive lists of symptoms, time frames, tests that had been done, and take those things with me to appointments. They helped remind me that I wasn't making things up, that I had done my research, that I know my own body better than they ever can, and that I was the one making choices about medical care. It's really hard, and it isn't fair, but there are good, compassionate doctors in the world who will hear you.
Actually, while I was reading your comment I thought of fibromyalgia and how relatable your words were. Kinda intresting... greetings from a fellow sufferer.
It definitely sounds autoimmune. If you haven't already, see a rheumatologist.
I realize I haven’t ever commented on how much I love the asides to the side camera. Because I do. So I did. Thank you.
This was so helpful! Thank you! I literally just spent all of yesterday with a doctor telling me, "Well, since you're a teenager, and you have just been diagnosed with depression and anxiety, you're pain is all a result of that."
Like, yes that can happen. But I haven't been depressed my entire life but I've had pain my entire life. Sometimes I wish people would just actually listen ugh.
"Process of collaboration" is such a key thing to remember. I've had such better interactions with doctors when I approached it as "I'm looking for a partner to help me with this journey, so let's work together/I'd like to try x thing and see if it helps, are you open to that? " they've been so much more open to my ideas and what I'd like to try.
Getting a diagnosis on my chronic knee problems took about eight to nine years. I started having knee issues in late grade school, but at first I got told I would grow out of it (despite one of my older sisters needing knee surgery at 20). When I brought it up to my doctor later, he said it was just overexertion from working in the fast food industry. Doctor #2 said the same thing a year later. While they were not technically wrong, my knees get overexerted much faster than my peers. At the end of January this year, I ended up in the ER from how bad my knee pain was. The ER doctor was awful and pretty clearly did not thing my knee pain was as bad as it was. He ordered x-rays, but not a full set including what my current doctor described as sunrise view (which would have made my diagnosis pretty clear). He also did not order an MRI. The tests he ordered came back with everything listed as normal besides me being slightly hypokalemic. I had a follow up appointment a few days later with my current doctor where he looked at the x-rays and showed them to me, and he could not believe that the x-ray reader did not see that the track for my kneecaps is too shallow. Because of this, my knee caps don't track right and are starting to deteriorate my cartilage even though I am only 19. I am more or less guaranteed to knee surgery, but since I finally have a diagnosis I can better delay the need. Please please PLEASE do not stop advocating for yourself when you know something is wrong. A diagnosis that can get you better treatment and improve your quality of life is better a little late than never!
Yes to the gaslighting thing by doctors. I hate that so, so, so much!!
I used to let them get away with it, but i put in my head that they get paid a lot of money to help me and I expect them to do their job. I have become very focused on demanding they do their jobs. I do not let them intimidate me any more. I hope you can find your inner pit-bull!
@@cbryce9243 It's not all doctors. But I did hate almost every surgeon I met because they often said after the inspection "You are fine" or "You have nothing" and after a while I learned to translate that to "there's nothing I can cut you open for, so there's nothing in my range of expertise" - this what they actually mean or should say.
I wish all of them would get sick just like us...maybe then they would understand...but maybe not even then cause they are all psychopaths
Incredible : I was literally (true sense of the word) talking to my mate about my fears of chronic illness via long Covid that are now linking up with my military ptsd, when this episode popped up in my subscriptions via Notifications. That was a long sentence!
Haven't watched the video yet but I can already tell im gonna relate. It took me YEARS to get a diagnosis and even then when I get a new doctor I have to explain my illness over and over again. I shouldn't have to feel like I'm more knowledgeable than my doctor
Thank you for talking about this, Jessica. I'm currently trying to get a diagnosis for an issue and just passed one year of tests and treatment. It's so frustrating.
Is is... Sending you lots of strength 🤗
Thank you Jessica. my wife has a chronic illness and it was remarkable how quickly we got a diagnosis (7 Months).
Best of luck with your journey!
Thank you so much for this. 10 years ago doctors indirectly accused me and my mum of faking my seizures just because they didn’t present “typically” there are over 100 different types of seizures! I also have GAD, ADHD,OCD, CPTSD and I’m autistic (I personally don’t see my autism as a disability but everyone’s different)
a lot of the time unless they’ve experienced something similar themselves, doctors dont seem to understand how important a diagnosis is to people. They talk about not wanting to give someone a label but for me a label is everything!. Wanting a diagnosis doesn’t equal wanting the illness/disorder It means I’m not alone and if you name the monster they you can slay it. “It’s all in your head” is the worst phrase, where else would I keep my ADHD? In my foot?
The song ‘a diagnosis’ from crazy ex girlfriend describes it perfectly.
Do you mind sharing how your type of seizure was diagnosed? Also if you’re up for it what kind of symptoms did you have? I’m also been told my symptoms are complicated and dr can’t figure it out yet. Will see a new Neurologist next.
@@ellajaynes2159 of course! I was 12 at the time so my parents kept a seizure diary as I’d often forget about them (plus ADHD but undiagnosed at the time)
first they did blood tests to check for metabolic disorders, then an MRI to check for lesions or tumours which was all clear. Next was an EEG which is a bunch of wires stuck to your scalp with goop then they try to induce a seizure with a flashing light and fast breathing. There was no unusual activity so we tried a sleep deprived EEG and still nothing and I was finally diagnosed after a video telemetry which is an EEG with superglue while you stay in hospital and you’re filmed for 4-5 days. This process took around 7 months on the NHS. We had some trouble finding the right meds for me but everyone reacts differently to them. I managed to go seizure free for a while aged 14-16 but started with tonic clonics at 17 which I’d never had before. Fortunately they were controlled as soon as I started on phenobarbital. But my partials continued. Shortly after I had a year of tests to see if I was a candidate for VNS or brain surgery but I wasn’t so more meds! I’m almost 23 now and average at 6 seizures a week. For me they feel like a sense of impending doom and although I’m completely awake, I’m not particularly alert. I’ve also had deja vu, myoclonic jerks, smelling something that isn’t there or things just feeling ‘weird’
When I moved from paediatric neuro to adults I started seeing an epileptologist who suggested it was worth looking into brain surgery again but a) COVID and b) I’m afraid of hospitals 🤦♀️ I’m working on that at the moment though so hopefully one day. My current meds are lamictal, phenobarbital, zebanix, sertraline, fexofenadine, vitamin D and melatonin, only the first 3 are for epilepsy though.
Everyone’s experience in diagnosis and treatment is completely different but I do highly recommend an advocate. Also sometimes you just have to keep pestering them, you know your own body and you know when somethings wrong. I apologise for the essay and I hope this helps!
@@Catmum1998 I appreciate your essay. Thanks for taking the time write all that. Wow that’s a lot of tests and time to get answers. Thanks for sharing I can relate to a lot that!
@@ellajaynes2159 no problem, glad I could help 😊
Everything about this video made me feel infinitely less alone. I can't thank you enough. Finally got a rheumatology appt two years ago after decades of pain, only to be told to go and see a shrink. Needless to say I haven't been back to the doctor since. I can barely walk at the moment and feel so helpless as I can't cope with being turned away again. The bit about how your brain works with important papers etc literally made me shout out "That's ME!!"🤣
I just got a rheumatologist appointment too and the moment he knew I was a uni student he completely dismissed me. Handed me a fibromyalgia leaflet, told me "it's not actually fibromyalgia, your symptoms are mild (they're not) and in fact you don't even have an autoimmune disease". When I looked at the leaflet he had condescending underlined "sleep" "exercise" and "CBT".... I feel like I've hit a dead end. Waited 4 months just to be told essentially that I'm a lazy uni student. It also clearly states in my medical record that I did physiotherapy and it didn't help me - and he suggested I just do it again anyway...
Living in the US, I have found that avoiding the words drug or medicine, I was able to get the appropriate treatment. Seeing a MD over a DO will also increase your likelihood of receiving medication. The best phrasing I’ve found is ‘seeing the impact on my daily life, what would you recommend to allow me to do _________’.
This is excellent advice!!
RE Medication requests: I just dealt with this. Another friend of mine with Ehlers-Danlos was put on a certain pain patch and she sang it's praises for it's ability to help cut her pain down. I was just getting established with my own pain management doctor and he was taken aback that I requested the same one until I explained that I had already tried other medications and that she has the same disorder as I do.
i literally cried at the end of this video, the talk on mental health not only touched me but absolutely hit me deep, i haven't had the best of time with my mental health lately and this whole video was just one big cyber hug and it made me feel less alone, even for a minute, that meant a lot.. thanks Jessica.
my question is - do you use something like a teleprompter when you do videos with long quotes like in history videos?
It took me close to 11 years to get a diagnosis, and because it’s a diagnosis of exclusion (plus the oh-so-fun medical gaslighting), I definitely still deal with a lot of doubt/invalidating my own symptoms (funny how that happens when your symptoms get invalidated for years 🙄). The online chronic illness community has been so invaluable for me, not only in making me feel less alone, but also in helping me take better care of myself!
I've been on disability for 6 years now with anxiety and depression. Thank you for validating me!
Thank you for this. I often catch myself thinking "do I actually have chronic fatigue, or am I just lazy?" and I know it's a product of having so many doctors doing so many tests and then saying "the test results say you're fine" (and I'm sure the eight years of being misdiagnosed and taking the wrong meds didn't help), but it's so nice to know that I'm not alone in that worry. That other people understand.
Wish I'd had a video like this back when I was first going through diagnosis/fight for benefits. This is a fantastic resource for people, thanks for making it!
Me watching this: "Yes, YES, EXACTLY YES!"
I will be sending this video to all my friends and family. All of this is incredibly important and helpful, thank you very much, Jessica!
Heads up, this is a long one...
I've been trying to get a diagnosis for my health issues since I was a teen... my mom wanted to find out what was wrong asap but we kept being ignored or told we were exaggerating/ making things up. Since about 2007 I have been having worsening symptoms.
It used to be where I would be tired more than everyone else after little to no activity. Then I started having bouts of paralysis where I couldnt get off the school bus to go home and had to be carried off my my brother and/or my other family members.
Fast forward to 2013 when I was a sophomore in college, I was having more muscle fatigue on a regular basis, my knees would hyperextend while walking to class, I had severe migraines that would last for days on end, and I started having trouble holding a pencil to write or draw. My cognitive function started to suffer and even still I couldn't get answers from doctors.
In 2014 I transferred universities and thought I was doing better until I ended up having to go to the hospital for stroke symptoms that they could find no cause for since everything looked "normal". From there I had daily complex migraines for 2 1/2 years that made me walk funny and barely function in general despite me having to go to school and work every day because i had to "suck it up." I ended up being homeless twice since my health made it impossible to keep a job that paid little and only gave 4 to 8 hours weekly. I'd get back on my feet long enough to crash down again harder.
In 2018 I finally got a job that was willing to pay well and give me full time hours (3 towns away from home), and my manager was willing to work with me and my mental processing issues and occasional flareups in mobility troubles. A year later she was transferred out and replaced with someone who didnt believe someone my age could have my issues and who tested and pushed my limits daily to the point that I would get to my car and not be able to drive home because paralysis would take over... my customers saw and worried since they saw me stumble and collapse several times.
Now I cant even leave my house except for small excursions where I use store scooters and/or a cane to get around. My tourettes is worse since an EMG that was done and paralyzes me by overexerting my muscles. I cant work and I dont qualify for disability without a diagnosis. If not for my boyfriend and bff I would've been homeless a third time several months ago.
Sorry for the long comment, I just needed to get this off my chest. I've been crying a lot out of frustration and fear that I'll never know what is going on with my body.
so sorry for you! Wish I could help...this is absolutely devastating to read. :-(
Excellent advice. My sister was told it was all in her head until she was so physically ill she could no longer function.
This may be helpful for my US friends trying to get access to pain medication for chronic illness that are having issues with their doctor or currently undiagnosed: Request from your primary care physician to see a pain management specialist. While your primary doctor may be worried about you "drug-seeking", the specialist is trained in taking people seriously and trained specifically in painful conditions. Meaning they can actually tell when people need help and can grant you their services and access to medications if necessary!!! This helped me after years of "well the tests say you are fine, so it must just be because you are stressed and we can't give you any more medication for that"
Just to hear the words "medical gaslighting" felt so validating!! If we really were "fine" we wouldn't be going to the doctor, and I feel like a lot if doctors dont understand how hard it is to even get to them, especially if your illness makes it physically or mentally difficult. I've also been taught to hide my weaknesses so it can be really hard to say all my symptoms, even more so if I'm worried the doctor wont believe me anyway (only for them to not believe me cuz I didnt say the full story oop). I'm now debating if I even want to try getting diagnosed again, so this video was perfect timing. So much love to anyone who's ever had to deal with any of this 💕
For some doctors the "If we really were "fine" we wouldn't be going to the doctor" isn't a valid argument because they think it is the money you want in case of conditions that are subject to get you a disability card. Like that disability pension could make anyone rich :)
I’m a doctor. I also have a couple chronic illnesses (mostly diagnosed, but one that isn’t beyond “yeah something’s wrong but we don’t have a name for it so byeeee!”). I will add under that “your doctor is human,” bit that remember it’s not your doctor’s fault that a test comes back normal. It’s not (most of the time) because they did it wrong or didn’t explain how it works well enough. Sometimes it’s just the wrong test, but ruling things out is important. Yes, the ultrasound I had was completely useless for diagnosing my endometriosis. But if it had shown something else I would have been spared the surgery I had instead. Only blame them if they stop looking, not if their process doesn’t necessarily lead where you want it to go.
What would help is if doctors said something indicating "the test was normal/negative" was the beginning of the conversation and not the end. Like "the test was normal for_____, but here are some other tests we can try or here is what else it could be..."
Really needed this tonight. I've been seeking diagnosis for 5 years now and I have a cardiology follow up appointment tomorrow where I KNOW I'm going to get more of the "you're fine" spiel, or the follow up wouldn't be three months after all the tests. My dad is convinced all of my symptoms are either psychosomatic or because of my diet. Things have just gotten worse and worse and I can't access any support services without a diagnosis and I'm so, so tired. Fingers crossed for tomorrow.
It’s crazy how long you’ve been on RUclips! Love your videos, Jessica!
I've had CFS for 10 years, and have just recently been able to get a diagnosis after years of medical gaslighting from so many different doctors who told me the classic "your tests are normal so I guess you're fine!". It's so hard to be persistent in looking for answers when everyone is telling you it's in your head. If it didn't get bad enough that I had to quit my job, I probably would have never gotten a diagnosis.
going to the hospital for several days on tuesday because i suspect having RA (lots of joint pain and stabbing feelings/trouble breathing), and i am terrified. Jessica's content means a lot.
Ask them to also test you for Celiac. It is the most common autoimmune disease in the UK and USA and has a host of symptoms. Most docs refuse to test, because there are no pills for it. But If you have CD, it can effect and affect everything you do. Also, look up polymyalgia rheumatica, osteoarthritis and asthma. Do you ever get rashes? I hope you get a dx fast. If it feels like they are not helping you, keep on them. They get paid well, expect results.
@@cbryce9243 Hey, thank you for the tips, however i live in neither UK or USA. i will look up celiac. and i have no rashes either 🤷🏻♀️
I spent my whole childhood reporting symptom after symptom, sitting out of activities and ending up in the ER because I was in so much pain and couldn't communicate why. I was told time and time again it was growing pains, I was exaggerating, I just needed to be more active.
For the past two years, aka as Soon as I had control of my own medical visits, I've been looking for answers. They threw out fibromyalgia, juvenile arthritis, and of course just "needing to lose weight" (despite being at a perfectly average weight) and after a while, I gave up.
Your videos made me realize my bendiness was a much larger part of the problem than any of my doctors thought. This past month I started physical therapy, got ring splints to allow me to write again, and yesterday I was finally diagnosed with Hypermobile Spectrum Disorder.
I know this is just the beginning, but it's so relieving to have an answer, even if it isn't something that can be "fixed". If it weren't for sharing your own journey I can't imagine how long it would've been before getting this kind of help. Thank you
I started getting migraines (my father had them, but was never officially diagnosed) at 11. They looked, but couldn't find a physical reason so I didn't get treated. What we didn't know then, but it was probably when my food allergies started. I was 22 before I discovered the food allergies. Then I had a serious reaction to my #1 food allergy - corn - and became way more allergic to lots of foods, that was about 8 years later. I suffered for about 18 months before my mother decided to take me to a different allergist. I swear he saved my life. About 5 years later I started having lots more body pain than before. It took discovering a book about fibromyalgia that I went to my doctor. He sent me to a rheumatologist who officially diagnosed me. I now go to a pain clinic and get some of the good meds, but I can't take some of the 'go to' meds because of my corn allergy - in may be considered an 'inactive' ingredient to some, but my body thinks it's an alien invader! Oh, and to let you know how long I suffered, the headaches started in 1965. I got the fibro diagnoses in 2001. I have only been going to the pain clinic for 10 years - I am 67 years old and will be 68 later this year.
"You're never too old to need someone to hold your hand." Yes! I couldn't agree more. 🥰 Thank you for another wonderful video, Jessica.
My doctor won't even treat my brain injury that I've had for 4yrs. I just wanna get better. There's no doctors here so I can't even switch.
She's currently refering me to mental health bc I keep crying while she gaslights me. Like ma'am I can't walk straight
Oh my gosh, what you were saying about having to ignore your mental health essentially because you were battling to get your physical symptoms taken seriously... EXACTLY, woooosh it felt like a snippet from my own life!
Still waiting on a diagnosis of my own since around 2017. Doctors don't want to give me one because a lot of them don't believe it's real. I've been told countless times that everything will get better if I just exercise more and move my body, but I've tried that for years and it hasn't made a difference. One of my doctors has diagnosed me with "having the symptoms" of my pain disorder, but won't give me the actual diagnosis because I'm young and if I exercise more, I might grow out of it, and also because there's no official treatment for it. Spoiler alert: just because I was young when I started having symptoms, I am no longer that young and the symptoms have only gotten worse. Now that I can barely walk without increasing my pain exponentially, hopefully I'll be able to get some improvement. Cheers to all of you going through the same struggles.
every time I watch your videos I catch myself grinning like an idiot at my screen - your positivity is just so infectious. thank you for being such an inspirational ray of sunshine in so many people's lives 💕
I know this is completely off topic, but I keep admiring it: Your eyebrows are _on point_ today! Gorgeous!
As a medial student, this is heartbreaking, and I really appreciate you sharing it. I think it's so important to remember that patients are the experts in their own lives. I'm going to try really hard to be approachable as a physician and really take seriously what I'm being told. Tbh, as one of my professors likes to say, if you listen to your patients well then making a diagnosis often isn't all that difficult since they'll tell you what the problem is. So listening makes our jobs easier, and it's really win-win.
Grey's was emotional enough to watch over the course of 16 years, and you watched it all within the span of a few months. That's...a LOT! Are you okay???
Took 4 years to get a diagnosis....no one seemed to believe me until I was having a hard time walking. Cried from happiness when I finally got diagnosed and could start treatment.
Hello everyone, how are you all? I hope you are doing well. Have a fantastic upcoming weekend and remember that someone out there cares about you and you will always be valid.
Thank you so much! Same to you!
I'm so so so happy I found this video! It's like a pep talk I didn't even know I needed. I'm seeing a new cardiologist next week after seeing the same dismissive cardiologist for four years that three of my other specialists have been telling me I need to change. I was scared to see another cardiologist because I was afraid of back tracking and I'm still nervous about it. This video calmed some of that and gave me great ideas for how to approach my future.