Addicted to Being Sad: The Lies We Tell Chronically Ill Women
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- Опубликовано: 11 дек 2022
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Original Daily Mail Article "Addicted To Being Sad":
www.dailymail.co.uk/news/arti...
#InvisibleIllness #Disability #Amputee
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I’ll never forget being 17 and breaking down in a doctor’s office when she handed me a 3rd psych med to manage my physical symptoms. I told her that I don’t have an eating disorder, something is physiologically wrong with me. About 5 years later, I was in an ICU when an amazing doctor (my current doc) diagnosed me with a rare genetic disease. I have been treated ever since and still get sick but I know what I’m fighting and that was an important part of my battle. I was lucky to be diagnosed relatively young but I’ll never forget the frustration of trying to convince doctors that I really am sick.
Happy to hear that you were finally diagnosed properly. It can be a immense struggle
When you find a good Dr, you never want to let them go!
I have achalasia, esophagus problem that required surgery - too make it mostly fixed.
Was very frustrating dealing with doctors who said it was just acid digestion or some combination of minor things... I couldn't eat right, still can't, but much much better since surgery
And this was something easily physically proved on barium x-rays and some throat probe (I forgot the name). Very frustrating dealing with most doctors and veterinarians....
You are the best 👌
You are and am what is
i have a teenage daughter who, due to a nuerological developmental disorder, has an extraordinarily high threshold for pain and discomfort. it seems to me that no matter what a young woman says, if she is not visibly very ill or hurt, the default is to simply dismiss her. it's easy to end up in front of a doc when you don't feel pain, or thirst, or hunger. i can't tell you how many times i have explained to a doc that my child's level of pain and discomfort arent a good way to gauge how ill she is, but they still have to be pressed to look further once she reports no pain.
the world despises teenage girls. on a societal level teenage girls can't breathe without being wrong. anything teenage girls like is shat on, anything associated with teenage girls and everything about them is derided. any emotions they have are seen as hysterics and any complaint they have is dismissed.
exactly, the misogyny coupled with the ageism makes teenage girls very likely to be dismissed. It's absolutely disgusting...
@@allister.trudel Yes ageism for women seems to exist our entire lives. No matter what stage of life we are in. First we are attention seeking girls (Teens/20's), hysterical women/mothers, (20's-40's) Karens, (40's-55 or so) and attention seeking befuddled old ladies, (60's and up).
Yup
Wow, weaponizing the "spoonies" term, which is for solidarity in the face of a hateful reaction to invisible illness, makes me so angry.
This legit made me SO MAD. How dare these girls (not women or young women) express their hysterics (legitimate pain and frustration) online and profit off of it?!
I only had one experience of this; I thought I had a real bad stomach flu, I walked bent over and felt sick, feverish and had stomach cramps. They weren't so bad, it was like bad menstrual cramps for me, same pain I had been used to for years. But I was on birth control and it shouldn't be so strong. After a few days I collapsed on the bathroom floor and called my parents (Thanks to bringing the phone with me everywhere). We called the ER; I was in so much pain I couldn't do much but pant for breath. Mum said the nurse wanted to talk to me. I tried to explain the cramping sensation of pulsating pain. She asked if I was pregnant. I remember being CONFUSED about this, I said I did throw up my birth control pills but I hadn't been with my partner when I was sick? She deemed me pregnant/overreacting and did not want to send an ambulance. Dad was pissed and called a laying ttransport as I could not walk.
One trip to the ER where I was put in 'probably flu so you can lay here for 12 hours without any medication'. I was confused, high fever and in pain, so I was just asking if I was pregnant and just didn't know it? Though it made NO SENSE. Both mum and dad had removed their appendix ages ago when it became infected, so they had asked repeatedly if it was that but were reassured it was not.
After taking tests, and a lot of things. One doctor called me in saying I was fine. They gave me some morphine, IV and sent me home. I felt alright! Good, I wasn't pregnant. Just the flu.
Cramps returned oncve the morphine and such ran out, we ran out of pain killers after a few days and we went back to ER, nurse behind the desk didn't want to let me in because it said I had the flu. Mum had to argue and scold the lady until I was put waiting for 10-12 hours again. My infection had risen to about 280, 0 is the normal. I was rushed to the infection apartment as they took more tests, thinking I had some infection.
After two days of this, someone gave me an ultra sound. Doctor just raised his eyebrows and said how impressed with my pain tolerance he was, my appendix had clearly burst and several abscesses of pus/fluid had formed in my bowels causing my entire body to cramp against the infection. I was rushed to twin-pig tail drain all the fluids. It was so swollen and inflammed they could not go in and remove the appendix.
I was put in the hospital on antibiotics, daily draining and such for two weeks. Granted, we did report this and a whole investigation was put in. So the hospital/state did take the complaint very seriously. But since it could've killed me, and was near to, I'm paranoid about my own pains and aches now. As my parents said; Cry, complain, insist, press. If you give any space for them to dismiss your pain/opinion that something hurts/is wrong, they'll do that.
You know yourself the best. If one doctor dismiss you, try and try again. It can be your life at stake, take the signs seriously.
....Though, also, never lie about it, or try to do it for attention. That will just ruin it for you and others if you abuse it.
I hope everyone has a lovely evening, take care of yourself!
Thanks for the video!
There is no reason that should have happened to you!!
@@louvin5671 I agree, luckily this was reported, investigated, and after a year I got a personal call from the head doctor of the hospital, a written apology and a written letter of what precations they have now made in order for this never to happen again. They'll also use my case to teach about scenarious/sympthons of a burst appendix fot future use. And they will use an ultra sound early as it's easier to see the appendix on thinner/skinnier people. So I am happy they at least took it seriously in hindsight. But it shows that ONE single doctor's wrong assessment can be the difference between life and death. (Turns out that one of the tests showed I had a burst appendix the first time to the ER; but along the way the doctor somehow missread it/neglected it/dismissed it and just assumed I had the flu instead). So try, and try again!
@@hannahnohlgren989 I hope to hell that the hospital and any care providers in the ER, who would have billed separately, were gracious enough to reverse/cancel any charges bill to you and/or your insurance. No way any of them should have been permitted to benefit monetarily for their neglect in their care AND them sending you home to what could have been a death sentence if you had not had someone advocating for you.
I'm so glad your parents were so supportive and were there to advocated for you!
@@tinydancer7426 Luckily I live in sweden, where our health care is a bit different than USA. And I was under 25 so I didn't pay for anything but the medications when I was sent home 2 weeks later. And we paid for the laying transport since we didn't get an ambulance, but otherwise I didn't pay anything at all. So I didn't have to worry about such extra payments. 😅
Masking needs to become a recognized phenomenon, it spans so many chronic/long term illnesses, both physical and mental. I mask my pain and my depression from EVERYONE in my physical interactions, until I break down and starts shouting. And then I get chastised for not "asking for help", when I know from experience that nobody is that interested of helping, except for other broken people. And since I am not an abusive user of people, I am very careful of asking too much of the few that actually offer help.
I see you❤
as a potsie, i was fucking seething when this article came out, looking at all the comments on the site involving ppl affirming the message and tearing down disabled people, it was disinformation and incredibly fucking harmful.
I remember being brushed off for so long that I convinced myself that it wasn't that bad, and when a medical professional finally told me "yeah you're disabled and you're gonna deal with this the rest of your life" I broke downm because the truth just smacked me in the face so hard, I wasn't prepared for it.
Sorry to hear that happened to you. Sending love your way 🥰
I hope you're doing at least a little better now! Sorry you have to deal with that :(
A neuro surgeon told me I had nothing wrong with my neck, despite not being able to walk properly or not being able to grip with my hands. I had to fight to get an MRI, they said ok if it will make you feel better. I had the MRI and 3 levels of discs in my cervical spine had collapsed discs that were pressing on my spinal chord. I was in the hospital the next week.
Did you get an apology and they, a smack across the back of their heads like I imagine? 🙎🏾♀️😡
@@Gumbier_Than no they put me in the private hospital, bribery eh. Still I haven’t seen the neuro since, just pure arrogance! 🤔
As a 30 something man who started having depression and anxiety in my 20s, people who handwave away invisible pain as just anxiety can go dunk their heads in a lake. Anxiety can be debilitating and while I've been fortunate that no-one ever dismissed my pain I can see how having it downplayed like that can be super harmful. If anyone else feels pain that others dismiss please know you are valid and your pain is worth treating.
As someone that lived years with undiagnosed fibromyalgia, I can totally relate. Thank you Jo for being so open about what you have dealt with.
Same, listening to Jo helps me just *process* and untangle the mess of emotions and reactions and habits I have from these experiences. Thank you!
Yep, I lived for decades with undiagnosed Celiac Disease. I was brushed off for over 25 years. Finally a student doctor did a blood test and it came back positive, so they did a genetic test and an endoscopy and they diagnosed me with Celiac. My life is completely different now, but during those 25 years I was treated like a faker by the medical community.
Same!! I was just diagnosed with fibromyalgia last July after years of symptoms.
@@FrackMeister, mine was in late May of last year and even then had to show my doctor the checklist of possible symptoms and that there were only 3 that I didn’t experience. I also had evidence with me about a family history of it.
I just got diagnosed with fibro this year after so many years where my pain was just ignored by all the adults in my life, it's been such a gift to have this community to help me process it. I hope you're having a low pain day, I see you and I'm sending hugs.
I keep coming back to a moment when an ER neurologist dismissed my issues in front of my new partner and I just assumed she was going to side with the doctor and think I'm making things up or being dramatic, because that's what everybody did up to that point. Her getting angry on my behalf and demanding for me to be taken seriously made me cry like a baby and I still get choked up remembering it. Being believed is so crucial in any healing process, in accepting of being ill, in feeling valid despite sickness. I will forever be grateful for that first moment of "huh, there is another option available that doesn't make me feel like a hysterical lady" and angry at the same time, because it took 29 years of my life for it to happen.
More of a mental health story rather than chronic pain, but I heavily relate to this.
I was told so many times as a child that I was being too emotional. My chronic procrastination, subsequent frustration and emotional distress was brushed off as "just a girl thing". When I first started seeking counselling in my early 20s, when I finally had clinical proof of depression and anxiety, and I reveal that to my mother, she told me, "you can't possibly be depressed, you live a charmed life." Years and years of being dismissed, and yes, I've learned to mask my emotions. When I fail to, I am exasperatedly asked what is wrong, and only once I respond with an 'acceptable' cause, for instance "my partner's mom died", is the distress taken seriously.
Thankfully, I found out I have ADHD (with emotional dysregulation, hence emotional and rejection sensitivity as a child), so it's much easier to manage. But the worst part is that my masking tends to cover genuine happiness too, so friends will often ask if something is wrong when I do not respond to something fun with joy. It's not that I'm not happy, it's just harder to express the level of it. Thankfully my friends are patient, and my doctors and therapists are much more empathetic than my parents have been.
Meeeeeee
same, after years of hearing my problems are made up I finally got diagnosed with ADHD and ASD at the age of 21. I feel like I have the opposite situation to people who deal with chronic pain - I often feel like if I show one time that I am able to do something, then I won't ever get any accommodations because people just assume I always have the same energy levels. My family stopped me from getting diagnosed saying I would use it as an excuse for not working on myself (and that's after 2 years of therapy which they didn't want me to attend either). Anyways, just wanted to say that I relate to years of heavy masking and hearing that I look fine:|
@@karmelbryza oh my goodness, yes that too! I've started getting accommodations now in grad school, and trying to work on internalised thoughts of "I'm not *that* bad. Do I really need accommodations?" But it's amazing what proper support can do
Oh my god I hear you, being a child and having mental health issues is a nightmare. I had severe childhood anxiety and instead of it ever occurring to my doctors that I might be experiencing that, I ended up getting blood tests, chest x rays, EKGs and some sort of lung air capacity test thing and in the end I was diagnosed with.... indigestion. They prescribed me antacids. It took me a long time to ever finally get diagnosed with anxiety, and being told that what I was experiencing was potentially a result of something being physically wrong with my heart or lungs gave me really intense health anxiety. I still had no idea what was wrong with me, and now I was worried my lungs were too small.
I went to the doctor for shortness of breath. I'm sure the tests were just to be safe, but never once was anxiety even discussed as a potential cause.
This happened to my Oma when she was in her seventies. The doctors kept saying she wasn’t in pain, she was faking it; one told her that she’s wasting resources from people who are actually sick.
She had pancreatic cancer.
The blood or hormone (or whatever) test that shows pain being experienced kept coming up negative. Her levels were always showing normal. But she was in severe pain, and doctors kept refusing to try different tests because “this one works.” It took months before our family doctor finally pushed for an ultrasound, and the cancer was immediately caught, obviously at an advanced stage. Our family doctor apologized for not believing her and sent in this knowledge that the test isn’t infallible. But it still came at the cost of an elderly woman being in severe pain for a long time.
Teenage girls are so often dismissed for a variety of reasons, and it’s exhausting to see this trend of belittling not ever seem to improve in general.
As for my thoughts on why doctors can be resistant to believing patients, I cynically think there might be a degree of pride or superiority that comes from being an authority figure. That’s not to discount the years they’ve studied medicine or their wealth of knowledge; I know it can also be exhausting to field “bad internet advice” where patients believe their Google searches more than the medical professional in front of them. And I do believe that most doctors generally do care, but they have so many patients to care for that being bogged down by a medical mystery can be frustrating.
Oh my gosh, that is so terrible. I'm so sorry she and your family went through that. I understand that pancreatic cancer is one that is just incredibly painful.... I kind of wish doctors that are are involved in dismissing a patient like that would have to face a public shaming or something. It's just not fair for any patient to be put through something like that.
That is utter nonsense on the doctor's part. Our body has defense mechanisms in place to deal with pain one of which is a hormone that has the effect of numbing our perception of pain. However, this is by no means an indication of if we are feeling the pain or not. Hormones are a complex and tricky business under normal circumstances and they are especially under-researched in the elderly population. Hormone levels alone are such a small part of how pain is perceived that while they can typically be used as a secondary indicator they are by no means the end all be all. Those types of tests are used to rule out potential explanations for symptoms they should NEVER be used to dismiss the symptoms themselves. That is like looking at a fire and saying it can't be there because the fire alarms did not go off. All that means is that the fire alarm is also broken. This shows very poor judgment on the part of the doctor bordering on straight-up incompetence. It always pays to do your own research. Though not everyone can dedicate the bandwidth to deal with the multi-layered puzzle that is human physiology I do think that everyone should at the very least be familiar with the basic logic behind diagnostic practices so they can better articulate why this is such BS.
OMG, Im actually in tears crying! I am a 55 year old man that has experienced this for 30 years! I had a serious accident at 25 and have suffered seriously mentally and physically since, yet this video explains my entire life since! Thank you Jo! Your awesome!
It's been my experience everyone's pain is a different but pain is still pain. You don't have to understand it to acknowledge it in someone else.
Very true
The Daily Mail is well known in the UK for having a down against anyone who is different. They stir up ignorant prejudice against all sorts of groups, from refugees to trans people and I guess this is just one of the groups they have decided to pick on now.
As for myself, mental pain is so invisible that it can frighteningly easily be ignored or dismissed, to such an extent that I wrapped up and completely buried my mental pain for decades. Only in the last few years have I slowly been able to rediscover and begin to unwrap what is really going on with me. I haven't the words for it yet, but I strongly believe autism is at the root of it. It explains so neatly the difficulties I have experienced all my life. And I'm 66 years old now, so I have a *lot* to unwrap .
Hoping more people see this - a lot of people outside the UK seem to confuse the Daily Mail for an actual news source. It’s banned as a reference source by Wikipedia editors as it lies so much, and is basically trash
Thank you for this! A close family member and my family doctor both insisted my illness was imaginery to anyone who asked. I almost died of a glandular tumour because of medical neglect. I shut the family member out of my life years later once I started therapy!
Oh no,, we dont need any more big places calling us fakers,, thanks for talking about this. I've got bad medical trauma because of doctors who had the same "it's for attention" mentality so having people talk about how stupid that mentality is is helpful for me.
My friend's kid was in acute pain for over two years, being poked and prodded and told they can't find anything wrong, disallowed from seeing adult specialists because she was still under the "care" of the children's hospital, repeatedly discharged from ER only to pass out in the doorway, maybe you need to see a psychiatrist... until someone finally did the test that found it to be Lyme disease that'd been tearing her body apart unchecked for years. Pandemic lockdowns sure didn't help with diagnosis either.
@@bunhelsingslegacy3549 how is she now?
@@-Teague- Very slowly improving but her organs are all affected
@@bunhelsingslegacy3549 I'm glad she's improving, but I wish she'd been diagnosed sooner. Hope she continues to get better, love to her and her family
One other topic, Joe, is addressing the people that you can never tell them how your day is going. Eg: On of my oldest friends told me that it really makes her sad to think of me being in so much pain and stuck in bed for days at a time. So, for her mental well being, I cannot answer her honestly. Most other people don’t want to hear the “same ol’ sob story” about hurting, either. I don’t blame them, but damn it, they asked. Just a thought for another day. Take care of yourself.
I felt this so much when you talked about the fact that we learn to not talk about our symptoms. The flip side is when you do bring it up and are like "yeah, this has been going on for like a month" and people legit ask why you didn't say something sooner. Like, either I did and you didn't believe me or I didn't because I have gone through this before and was told to stop whining.
Or you mentioned it with normal conversational tone between other daily subjects 😄 That's me! All the time ready to down play the symptoms.
Me: "Yes, I have been ill now since 11th of June 2021. It is ok, I am on the waiting list to be seen. I will live. (I hope. Maybe I won't.) I am ok to be waiting so that people worst than me can go first (actually, I am pretty bad. Worried of dying without care, but yeah, let everybody else get help first.) Don't mind me, I am fine..."
"Yeah, that symptom started 10 years ago, but it is ok, I do not need to feel my toes. I got used to it already."
I've lost the ability to sleep more than a couple hours before I have to roll over or bend my back in a different direction and try to go back to sleep. Unless I drink a bunch or medicate and feel lame the entire next morning. I wrecked a motorcycle and broke most things. Honestly it's the lack of sleep and constant hurt I think no one gets. Hope this gets more algorithm attention.
This! I was severely anemic at one point - passing out, pale, shaking, etc. I will always remember the ER doctor telling basically telling me to get over myself. Wouldn’t give me a doctor’s note or anything. I get so nervous about going to the doctor for anything now because I anticipate having to fight to make them believe anything is wrong. My first reaction when I don’t feel well should not have to be “I’m afraid to try to get help for this.”
9:15 stories like these make me so happy that I have such a positive relationship with my primary doctor. I’ve had him since I left my pediatrician (I’m now 44) and he ALWAYS believes me and/or takes my inquiries seriously. I’m a pharmacist and I’m diagnosed with ADHD. When I told him I’m 99% sure I’d meet the diagnosis criteria for autism, he just talked with me about why I thought that and accepted that my explanation made a lot of sense. He’ll even run questions by me to get my clinical opinion on things related to pharmacy or neurodivergence. I really lucked out picking him out of the insurance list of covered docs!
I’m so glad he listened to you about you autism suspicions. The doctor I’ve been seeing recently thankfully didn’t dismiss my request for a mental health plan for a psychologist to help me deal with stress etc that comes from me being autistic but I could tell she just didn’t really care and that I was just another chart she had to tick off and she would only ask me stereotypical questions or assume stereotypes like that I must love reading because I’m autistic (I personally am not the biggest fan of reading). Anyway I’m glad you have a good relationship with your doctor because I wish I had one that at least cared enough to figure out what autism even is.
Ive had migraines since I was 14 and finally i found a doctor to help me after my migraines got so chronic I had months where i had them every day.
A lot of people didnt understand I was having them all the time because I was still seeing people while being in pain. Going to school and trying to pretend I was fine.
Having a invisible illness is tricky because it took a long time for people to realize how disabling my condition was because migraines are not seen as disabling as some other conditions. Meanwhile I was in so much pain I was barely eating or sleeping.
Luckily i found a fenomenal neurologist who for the first time made me feel seen and heard. She Got me counseling for coping with chronic pain and helped me see a way forward. Now im down to 10 migraines a month and we are testing out different medications to see what would have best effect on me. For the first time in years im glad to be alive.
This neck exercise has helped me to significantly reduce the frequency of my migraines, when I do it daily: ruclips.net/video/A8baXHPjYeg/видео.html
I have the same issue too; doctors wouldn't believe me about my migraines. People still are skeptical of me since I unlucked out into having the rare symptom of constant lightheadedness.
Something else I noticed is they try to treat you until you are good enough to "function" in public and not until you feel better. I'm still trying to find a good physical therapist who will treat the lightheadedness instead of just trying to get me to walk without a cane (which I can do but feels very uncomfortable).
Thanks for posting this. I’ve experienced this a lot especially with people from my church - they always say everything is in my head and that God will fix everything. They always say prayers will fix everything but prayers don’t provide a bed to sleep in, shelter, clothes, or food on the table.
I had to fire a doctor and a therapist last year who were both really good at first and helped me get my ADHD diagnosis. When I lost my job/house/spouse in a row and attempted suicide, they took away all my meds cold turkey. Yeah….pretty awful. People I know who are men never have any trouble getting their meds. It’s awful.
I feel that.
My mom went to 4 doctors for her health problems. And they told her, her head makes the symptoms up, she wouldn't have anything. And the fifth one found out that she had end stadium lung cancer.
And I myself had similar experience with a less deadly problem. I had so many symptoms. Headaches and pain in my arm or legs and my stomach often hurt and stuff like that and the doctors said it's just stress. And when I was 21 my gynecologist told me that my pimples might come from an allergy of milk protein. And all my symptoms stopped, as soon as I stopped eating and drinking milk products. And some doctors still don't take it seriously.
This resonates with me. It reminds me of a trip to the ER for my mother. We have a history of ovarian cysts in our family. I've had a few, she's had them, her mom as well. My mom at this point had a partial hysterectomy and an ovariectomy, so she had only the one remaining ovary. She presented with extremely high blood pressure, and was grey, as in she was so pale there seemed to be no blood going to her skin. After taking blood and urine, the ER Dr. "diagnosed" her with a urinary tract infection and was going to release her with antibiotics. I told him I suspected an ovarian cyst and asked for further tests to be ordered. HIs reasoning for his diagnosis was protein in her urine, fine. I was concerned about her appearance, blood pressure being so high, and the acute abdominal pain she was experiencing. His argument against checking for a cyst was that her history showed she didn't have an ovary on the side she indicated pain. I'm not doctor, but I had to convince him that he needed to check for a cyst. I explained that a cyst doesn't grow nerve tissue, but that as it grows, it pushes around all the organs, moving them out of place and straining them, which causes the nerves of the organs to trigger pain responses. Eventually the ER doctor called for an ultrasound to shut me up, and the ovary she had remaining turned out to have so many cysts attached to it of varying sizes from grape sized to baseball sized, they couldn't visualize them clearly enough to count them. She went into surgery the next morning to remove the ovary and get relief from the pain. What gets me is that my mother was being made to feel so unheard by this doctor, that she wanted to leave the ER and not get treated for a potentially life-threatening condition. I've had an ovarian cyst rupture; it was the worst pain I had ever experienced up to then, and I was afraid for my mom if she left and was bleeding into her abdomen from a rupture of a cyst or intestine. My procedure to clean out the tissue from my cyst revealed I had previously had another cyst which had ruptured and caused scar tissue to grow adhesions on my uterus, ovary, fallopian tube, liver, and large intestine. With her blood pressure so high and no flushing, but a grey pallor instead, I was super concerned over internal bleeding.
TLDR: The lesson is to know yourself and advocate for your health. Look up Fran Drescher and her uterine cancer diagnosis nightmare, it can happen to anyone, but especially women, and the most vulnerable women when it comes to being believed by their doctors are African-American and Hispanic women.
But ah, you are a hero! You knew your medical stuff and your mom! And knew clearly how to advocate. That doctor was being bullish and stupid. Of course she needed an ultrasound! And so glad that you made him to do it! 💗
You know you live with chronic pain when….you realize you have more words to describe pain than anyone else around you. When you ask someone to describe their pain and they look at you funny and say “it hurts, what else is there to say.?” 🤪
Everyone has a reference point for pain but they're all personal, not everyone has experienced pain that makes it hard or impossible to function... so maybe for them it hurts as bad as anything ever has, and isn't it nice for them they've never experienced pain so bad they have to make a conscious attempt to breathe?
I teared up while watching this.I have alot of anger and hold alot of grudges against doctors and able bodied people who keep telling me that I am faking it.They have no idea how freaking lucky and privileged they are to be healthy. In my case,my own family has accused so much of faking my illness and they still think that I am being dramatic and overexaggerating when I am actually underexaggerating and masking the pain all the time. No doctor wants to diagnose me and I just don't know what to do. This anger has just led me to hating able bodied people.
I'm so sorry for what your going through, it's so unacceptable... If you haven't yet joining a support group for people with the illness(es) you might have could help. Among spoonies we give each other tips, whether about which drs to see/avoid or how to ensure you'll be listened to (bringing a friend or family member along to your appointments for example). I hope you get a compassionate and proactive doctor soon
Thank you for feeling comfortable enough to tell us that. I truly hope you find help soon. Surely there is somebody out there who can aid you. I'd suggest going to therapy, they will advocate for you, and give you pathways. That is if they are a good therapist.
@@allister.trudel Thank you so much for you kind words.I really needed it.
@@jewels3400 Thank you.I tried going to therapy once but it didn't work out.I plan on and hope to try again.
i never realized how much of my experience i internalized of being a chronically ill teenager. i had a head injury nearly 7 years ago and i didn’t find out until this past year that i had nerve damage in my neck that resulted in basically nonstop chronic headaches that countless doctors and neurologists and specialist could not find over the years. after seeing so many doctors tell me there couldn’t be anything wrong i definitely second guessed myself and my own body on countless occasions. i am just so thankful i had my mom who has never stopped being an advocate on my behalf because i completely lost the ability to communicate how i physically felt. without her i never would have found the underlying issue and DEFINITELY wouldn’t have had even made it this long.
One thing I've noticed with my own chronic pain is unless people can physiclaly see why you're in pain, they will never believe you. Especially with doctors who have this preemptive prejudice towards their patients. I've been in and out of doctors offices because of chronic back pain, and when I saw my new primary, she instantly didn't believe me when I came in for any pain or discomfort. Took roughly 6+ years before someone, not my primary, to figure out what was wrong with my back, and to this day my primary still doesn't want to deal with it
I was legitimately relieved when I was told I’d need to have my appendix removed because it meant I hadn’t wasted everyone’s time just being a whimp.
This happened to me as a teenage girl, then later as an adult. As a teenager, I was dealing with life-threatening health challenges and doctors made me question whether it was all in my head. (Newsflash: it wasn't.) As an adult, I have a hard time believing I really am in pain until I see something that proves/justifies the pain. CRAZY EXAMPLE: After a foot surgery that eventually led to amputation, I wasn't regaining the ability to walk. I asked the doctor why. He literally told me I had a low pain tolerance and I should "go kick things, push through the pain." I went back to taekwondo for a few months. Then a new doctor did a CT scan and saw that I had an unincorporated bone graft and I was KICKING WITH IT. I had been conditioned to ignore my own body. Like you, Jo, people can't always tell when I'm hurt, so I have to explain when I really am in tons of pain. Sometimes they believe me, sometimes they don't. With non-medical people, I can't win whether I keep it to myself or whether I express is.
Kicking...Wow! 😲
Try yoga nidra meditation. You lay on your back and with your awareness you go throught all the body parts of your body on the beginning of the practice. I am sure that you can do "body awareness meditation" separate too, but yoga nidra is lovely.
It hopefully helps you to knowledge your body better (with time) and you start becoming more aware of it. I do not think that it actually reduces your pain tolerance as you can still keep separating it from yourself or ignoring it when needed. But the technique is easy to do and helps you to integrate into your body better.
Sorry for the unrequited advice, but it just did come to my mind to share.
Your paintolerance is incredible! But I feel that you are dissociating from your own body a lot. This might help you.
Thanks for talking about this. It took 5 years for me to get my ME/CFS diagnosis, and I was misdiagnosed with anxiety when all my blood tests came back negative. If I hadn't continued to push my body past its limits for so long I would now have a higher hope of recovery, but as it stands this is now likely a permanent disability. I'm so grateful to you Jo, and to the disability and chronic illness community for helping me accept that and to feel less alone. I think part of the reason people don't believe other's feeling of pain or fatigue is that capitalism sucks so "everyone is tired, stop complaining" becomes the default reaction. We have a culture of tired Olympics and "no pain, no gain" rather than of giving our bodies the care they need.
Very good insight! I agree!
👍👍 100% get where you're coming from Jo!
I did a lot of this pain masking as a kid, growing up the youngest in a household of four males and attending an all boys school; tough it out, don't let it show.. I'm now receiving treatment for the fibromyalgia I was diagnosed with aged 30, it turns out I actually was in a lot of pain all those years! Wasted 15 years of my life in chronic pain thinking it was normal 👍
Ooouugh this brought up a memory. When I was in 8th grade, I felt so horribly sick every single day. Especially right before lunch, I would feel like my stomach was inverting, lightheaded, cold, nauseous, all of that (I was probably just hungry, but there was no eating allowed in the classrooms and I had late lunch and I'm pretty badly underweight, so 'hungry' for me is not "Oh, my stomach is rumbling., it is "I am on the brink of passing out.") And so, as people tend to do when they don't feel well, I often complained about it to my friends because I felt *awful.*
One day, I started again, and my best friend at the time turned to me and went, "We *get it.* We *know* you don't feel well, just shut up."
And almost 8 years later, I still struggle to tell people if something is wrong now 🤡
While I don't think that I'm in a good mental place to watch this right now (I've gotten extremely lucky with doctors over my chronic illness journey, but I'm always terrified that I'm going to run into this if I ever open up to anyone else about being sick), I wanted to stop by and give a hug to everyone who has ever had their pain and symptoms doubted or belittled. We all deserve better
Hugs you back gently
Thank you. I was told by my doctors of 25 years that all my pain was because I was abused as a child.
what we should be asking, is not "how do we tell these girls and others to stop seeking attention" we should be asking "what aren't we hearing that these girls and these people are trying to tell us?"
coming from a healthcare worker background, it is hard to tell a patient that you don't have an answer for their situation yet. the system is so overwhelmed, it is very easy to dismiss than to dive deeper
I really related to this. I will bring up the length of time I can sit for a tattoo on a boney, painful part of my body as a way to explain to people that I can handle a lot of pain so if they see me in pain and it's to the point that I'm actually showing it, that they know it's real and severe.
I have a similar story to the piercing/cleaning a wound with something that stings story. I scrapped the top of my foot really bad in college and my friend saw it and said it was starting to look infected so she scrubbed off the scab and cleaned it with something that stung and they were all shocked at my lack of reaction.
I literally cried when I got an MRI back and it said I had a herniated disc because I was so scared that there was nothing wrong and it was just my fibromyalgia acting up, so they wouldn't be able to see anything, wouldn't believe me, and just send me home with no help.
Also, anything to do with being a female and having female reproductive organs definitely gets dismissed a hell of a lot more than most other things. That's definitely a factor in all that as well.
I'd love to hear your thoughts about being asked 1-10 on the pain scale every doctors appointment. I have no many thoughts about that.
Yes, the pain scale is tricky for me too
As far as the pain scale thing, I get asked this at the pain management clinic. I’ve long since learned to just answer with what I know they want to hear in order for them to leave my meds the fuck alone. So, in the office I usually say I’m currently at a 3-4 and 6-7 is about the worst it’s been in the last week. When every other year or so they decide that they have to do a “ trial” reduced dose, my pain goes up of course. All very well documented for the state. SMH
I think you mean "so many" thoughts there at the end, just making sure for clarity
As a Brit, I stopped reading the Daily Mail decades ago for my own sanity. Nasty, demeaning publication.
They also do that to seniors, although “It’s all in your head,” is replaced with “Just old age. Get used to it.” When, in fact, it’s something that would be diagnosed in younger people. (Think pneumonia, fixable heart problems, etc.)
This is so on point for today for me. I'm dealing with gut issues but the last time I was sent to the ER they couldn't find anything and actually said "I guess you pulled a muscle." Yet a month later still ongoing
Did you recently change or stop taking any meds ? Even if it's not a pain med ur body still gets use to it and will go into withdrawal if you stop or change cus it's so use to having it.
Did you also change anything in ur diet? I use to have gut issues I changed my diet and was fine and also I was taking pain meds and stopped and couldn't figure out why i was having issues with my stomach and it was cus of the withdrawal.
@@ronniewilliz153 no change
Have you gotten tested for celiac disease? It's very common (1% of population) and very often undiagnosed.
@@ThomasJ yeah a couple years ago
As someone who wasnt disgnosed even as dyslexic till i was out of schooll. Being asbergers wasnt a thing. So i grew up with nothing. Am i perfect. No. Am i as screwed up as a lot of people these days seem to be. No. There seems to be too much need to have labels and then rely in them for why you cant rather than understand now how to make it work. When i was a kid no matter what was wrong with you. You were expected to be like everyone else. When you arent its not easy. But. It is a way to teach people to be able to function in society. Ive had migraines since a car accident in 1991. People often say in that way of " oh you cant be having one because" i am bed ridden if i get one. Yeah cant lie in bed for 6 weeks. Cant have a day off work every day. I have a high pain tolerance. Worked well for my bowel operation. But like you say if i say it hurts. It really does.
I relate so much. I have had extreme fatigue since I was 13 and now as an adult I have pain related to a couple other conditions. My doctor as a teen dismissed my fatigue (suck it, bitch it was a sleeping disorder). Having lots of people not believe me or understand the depth of fatigue I was going through was damaging. It is definitely part of why I tend to be closed off to a lot of people and for sure why it takes me forever to go to the doctor. Even now with a fabulous GP who listens to me and is compassionate and willing to try things or find specialists, it is so hard. It feels like finding a humble doctor is so difficult but even with one, I'm still nervous I will be dismissed even though with my doctor that has never happened.
I spent my teenage years in physical pain, severe headaches, and passing out but doctors thought I was faking it because "the tests came back fine". I restricted my activity, built up my pain tolerance, lost trust in the medical system, and toughed it out. Started exercising again at 22 and it started happening again. A specialist thought it was blood sugar related, thought it was reactive hypoglycemia, put me on a super restrictive diet that triggered an eating disorder but the fainting, headaches and pain persisted. The doctor straight-up accused me of faking it. I went back to my primary and asked for a referral to an eating disorder program, which required an ECHO. Boom. two heart conditions that accounted for ALL of the symptoms. YEARS of pain, passing out, weakness, failed medications, testing, medical trauma and distrust, all unraveled by a simple ECHO. Two cardiac ablations later and medication later, I'm still struggling to manage the heart conditions and undo all the medical mistrust and trauma that I gained along the way to diagnosis. I wish it was easier. I wish physicians listened to us when we said there was something wrong.
I had disagreement with ER doc in 2006: he kept saying it was my gallbladder, I told him it wasn't... took him 3 hours to ask why I was so adamant it wasn't my gallbladder, so told him it had been removed in 2004... I would have told him right away if he had stayed for just a few minutes to listen. Had to stay in ER all night, refused to leave at 3 AM... my Gastric Bypass surgeon was steaming when he heard I had been in the ER for over 12 hours before they called the surgeon. Right now am in chronic pain in knee, and pain in stomach since July 2022... unable to eat lots of things, had feeling (happens too much... if you get the anxiety diagnosis and are overweight... those are the problems, nothing else) not being taken seriously. Finally been referred to specialist last month. On 13th I finally get to see a Gastric Bypass Surgeon, as specialists here just don't know enough to help as no Gastric Bypass Surgeries are done at the hospital.
I’m almost one year in recovery from an eating disorder and I have other mental and physical health issues and this resonated so much with me. The number of times people have dismissed my pain is insane, and not right, and has made me scared to share this really big part of my life with anyone new, and even with the people who are consistently in my life. It was so frustrating when my husband had an acute medical emergency this year and people automatically believed his pain since it was so visible, and I hated how I felt upset about it because I didn’t want to invalidate his pain but I was mad that I had to fight for anyone to believe mine. It as very triggering. We are valid and we deserve care, from professionals and those around us.
You reminded me of the time I suddenly got really bad chest pain and actually felt like I was going to pass out. I was home alone and reluctantly called 911. From the start even the EMTs were acting dismissive once the quick EKG they did showed I wasn't having a heart and kept insisting it was anxiety. They basically wanted me to get out of the ambulance and go back home when I was visibly in pain. I insisted on going to the ER and the dismissiveness only continued there. I spent more time with the guy from administration trying to get insurance information from me when I could barely talk than I did with any medical staff. They ended up saying I had heartburn and was getting discharged because there was nothing actually wrong with me. I couldn't even finish speaking a sentence without stopping because of the pain and the nurse discharging me looked annoyed. I was told to go ask the security guard in the lobby where the nearest bus stop was so I could walk there to figure out my way home. I ended up taking Lyft to a different ER. The problem I actually had was pleurisy and despite my regular doctor saying it would just go away on its own, it's been about 4 years and it still happens randomly. Now that I became disabled almost 2 years ago with chronic joint pain, good luck getting people to take me seriously when I tell them the COVID vaccine caused it.
I see so many here in the comments who get it and we all deserve better care.
my POTS was dismissed as anxiety until I started falling a lot at 23. if I had been believed, maybe I wouldn't need a wheelchair now. it's very frustrating.
Thank you for speaking about this! I experience the same defensiveness and anger anytime I have a doctor’s appointment. At this point, a doctor has to actively earn my trust. I simply cannot come into a medical interaction without deep, deep reservations and mistrust. It’s something I work on in therapy, but it is really comforting to hear someone else discuss their same experience. Thanks as always for all you do!!
Honestly both my mother and I have had to fight against doctors many times to get help. We're both disabled but no one ever believes us.
I broke my arm at 16, and after coming out of PT I was still experiencing pain in my arm. I had been misdiagnosed for 4 years with “just tendonitis” before I got my nerves tested when I couldnt feel my right hand. I was 20 when this loss of sensation was addressed medically! My doc that went it to cut the cubital nerve DAY OF surgery was skeptical about peforming this on me, he thought I was making it all up because most people with nerve issues are older. Well if you looked at my medical histroy I had TRAUMA TO THE AREA!
This is why ppl turn to the internet to diagnos themselves, and or not trust any medical doctor ever! Similar thing happened when someone in my family told me to wear essential oils like a perfume. I got a chemical burn, when to the ER and the doc said the burn was from overusing cortisone steroid cream (but not the essential oil)…..I have dyshydrotic eczema, I know what skin looks like, and how your body feels when you overuse that stuff!
This is exactly what I have been feeling for years
Being gaslit and abused from medical professionals made my disabilities from bad to worse. My knees are damaged and I deal with chronic pain, with my best days uncomfortable to walk and my worse with barely able to walk. I keep quiet about my invisible disability because I want to focus on life instead of the pain and not scare people away. Doctors have accused me of lying about being hurt because imagery is inconclusive and masking the level of pain. I feel like I need to prepare a detailed presentation to just get anyone to believe I’m telling the truth. I have a distrust of medical workers and makes it hard to seek treatment because I don’t believe I’ll get helped.
Thank you! I’m sat here thinking I thought it was only me! Hiding it. The medical gaslighting. The ‘it’s boring’ from ‘friends’. Thanks Jo x
Something I think needs to be brought up, not to dismiss doctors not doing their jobs (they need to be held accountable), it that insurance companies are pushing doctors to only spend 15 minutes with each patient. There is no way a doctor can do their job in 15 minutes. I have met some doctors that are in and out, fast as they can, and others that actually spend time with you to figure out what is really going on.
I have the opposite problem. Almost everybody thinks that I should be in pain since I have MS, but I'm not. Oddly enough, when I say that I am in pain, almost nobody believes me 🤦♀️
Talk about a no-win situation 🤷♀️
My grandma had MS and it temporarily took her vison in one eye, but mostly the nerve damage from it just covered her arthritis pain, and I know two other people who have MS and one's in a wheelchair and the other presents as completely able as long as she doesn't overexert herself. It's such a weird disease, if you know one person with MS, you... know one person with MS.
I am 63 with severefibro (my Dr of 20 years words), spinal stenosis, kidney damage and severe headaches. I have never had anyone willing to just sit and listen to me.
Thank you for being a voice.
I had a dr tell me very harshly when I was 14 that my symptoms were all in my head. I was convinced I was a hypochondriac for years. Finally 12 years later a dr cross trained in Endo, diagnosed me with PCOS. I still had some unexplained issues and it took another 10 years to figure out I am severely gluten intolerant.
I have been told "Some times there are no answers", denied pain medication because "Tylenol will be enough", and accused of being a drug seeker.
It is disgusting how women and disabled people are treated.
one of my theories of why able bodied people tend to think people with invisible illnesses are faking or over exaggerating is that if they believed what we said was happening to us was really happening then they would also have to believe that a person can live with that level of pain and discomfort and not give up, and to someone who has never gone through that and doesn't have to live with that it's hard to imagine that you could.
I spent over a decade being a dependent to the medical industrial complex 🏫. I had undiagnosed chronic debilitating illnesses and insurmountable pain throughout my entire body. I also was infertile 😭. It wasn’t until I took my own mental and physical health into my own hands that I started to heal. To do so I studied Dr Morse, Professor Arnold Ehret/Professor Spira, Medical Medium, and Eli Martyr. I changed my diet, got off the Pharma, started fasting and took herbs for support. 🙏🙏🙏 over the past 6 years I know I saved my life but I had many friends and family that weren’t so fortunate. All the best. Heal thyself ❤️
I remember being 13 and in agonising pain in a docters office and he had the gaul to tell my mother I wanted attention, that very evening I was in the ICU because meds that he had given me weeks before had caused my stomach lining to be starting to get digested by my stomach acid, I have never gone back to that docter to state the obvious
I've done this my whole life and I'm
64yrs young. Before they took my leg off , they kept telling me when I came in that it was just leg cramps.
That I was making it sound worse.
Chronic migraines have sucked the life out me. It is so discouraging and frustrating. I feel invisible most of the time and the rest like people are disappointed in me. Very little support. The idea of spending the time and money on yet another medicine, another therapy just to have it fail is maddening. People don't understand the fatigue of being on a rollercoaster of trying to find something that works.
I have a host of almost entirely invisible disabilities, plus I'm fat and trans, so I don't have high expectations for medical professionals. My current PCP and my current psychiatrist are great, but I've literally had doctors tell me that losing weight would help with my back pain, as if my fat belly is why my spine curves sideways (scoliosis).
Jo, thank you for being an advocate for those who suffer and are dismissed and not believed. My grandmother died of a burst appendix in 1929 (she was pregnant at the time) because the doctor didn't believe there was anything wrong with her -- "it's just the baby" is what she was told. Even though it was her fourth pregnancy and her doctor was a male who obviously had never experienced pregnancy, her concerns were dismissed, and she and her unborn baby died. How sad that 93 years later we are confronting the same issue.
I have had a few of doctors be dismissive of me, a couple of misogynistic basstards in particular. And also my family doctor. Thankfully, none of these visits were for anything serious.
But now I am tackling a pretty serious issue and am SO GLAD that I've mostly dealt with the Nurse Practitioner at my doctor's office. She is so amazing and attentive and the opposite of dismissive. I have another appointment with her soon and I'm actually looking forward to it 😁
Today I learned how good I was as masking. I had a traumatic experience a few months ago, I told my therapist about it. I've been feeling awful the whole time since then, increased therapy etc. etc. Well, today I casually mentioned to my therapist that I was depressed (that wasn't even what I was talking about, I just mentioned something about it) and she was like: "Wait, you're depressed?" I was stunned, I thought she knew. Apparently she was under the impression I had been feeling better for weeks now. And I didn't even try to hide it, I thought it was very clear that I was not okay.
Hmm...I agree that you are probably masking really well, but I would still question that how good is your therapists? Hmm. But this was just a thought. Hope that you are happy for her 💗 and get better soon!!! 💗💗💗
I’ve been fortunate enough to not have people not believe me when I say I’m in pain, but I feel like having such consistent chronic pain (from congenital spinal abnormalities and a serious car accident) means that I feel like I have to save my requests for help for when it’s really bad. I can’t ask for and don’t want help every time I’m in pain, but I push myself too hard because I know that the people who support me don’t have an unlimited amount of time and energy and so I try to limit what I ask to the essentials. I wish that I was in pain less often so that I could ask for help every time with no guilt or concerns for others having burnout, but that’s just not my reality 😢
Days, just DAYS before I was diagnosed with EDS and fibromyalgia, I was told “you’re not disabled, just lazy” from someone I thought I could trust. I was having migraines, non-epileptic seizures, and tons of other problems on top of intense daily pain.
I have similar issues depending on how many kids I go in with. If I go in with all 4 I’m taken much more seriously, if I just bring one I’m treated like an over anxious first time mother. I’ve gotten both responses in the same day! Having grown up with undiagnosed EDS and bad gi issues I’ve run into being minimized so often
My sister was dismissed by a doctor for what was later determined to be fibromyalgia. She hadn't dealt with doctors like this before, so she ended up breaking down. Thankfully, my stepdad was with her, and you could apparently hear his response to the doctor from the waiting room. Thankfully, it worked out in her case, but she shouldn't have needed him there to be taken seriously.
(Independently of this being a great video discussing many important topics that taught me a lot) The Daily Mail is trash. Even if you don't consider the body shaming, obsession with women's weights, the cattiness, the clickbait, and I could go on. (TW ableism) When I was a preteen, I'd sometimes look at it for style inspo, and there would regularly be articles with titles like "wheelchair bound woman caught gardening standing up - photo proof from neighbor - widespread issue of disability benefit scam!" or "this mother of 3 got thousands in benefits for her disability that supposedly didn't allow her to work - but would walk up the steps to her house despite claiming she needed a wheelchair".
I wasn't informed about any of this stuff as a pre-teen, and it really shaped my way of looking at disability at the time. I'm lucky I came across more educational sources before I put my foot in my mouth or hurt anyone, but I really didn't have any notion of what wheelchair users or disabled people were like - I didn't even know that there was a societal expectation of wheelchair users not being able to walk at all and if you could walk at all then you'd not use a wheelcahir - until I came across the Daily Mail, displaying it as almost a game of "caught her faking!", with some superficial trappings of investigative journalism to really get people into the " puzzle solving".
Anyways the less clicks they get the better - there are lots of magazines that publish problematic things but I really can't see that the Daily Mail has any redeeming qualities whatsoever tbh.
Thank you for sharing this! I grew up in a family that you masked anything that was bothering you, someone had it worse or you were asking for attention. It took me until my mid 20s to finally speak with a doctor and start working through what I need to enjoy life. Even now, years later, I walk out of doctor appointments questioning if I spoke to much or if they are going to brush off my request for help. I am high functioning, it is something I am programed to do so I don't show my mental health struggles or physical pain 99% of the time.
This reminded me of when i went to a doc (after several months of trying to baby them along into actually treating me) very exasperated and just demanded xrays. The doctor literally said to me "okay ill book it for you will that make you happy?" In a tone that was very condescending like 'just stfu ill give you an xray if you go away from me' kinda vibe and i was like "no?!?" Literally no im not in here hounding you for tests because i love having xrays done and getting my blood taken. If this doesnt identify the issue, then i will be returning next week and asking for further tests because im still in pain. Me having the xray doesnt take away the pain thats not the point, it doesnt stop there. My goal here is not 'have an xray'.
It was truly disgusting behaviour from them because it made me as a patient feel like i was lying, exaggerating, and like i was both a burden and waste of time for the doctor because they couldnt just shove meds in my face to make me leave and actually had to work with me ongoing.
Long story short.. its uh.. still 'ongoing' but i just fucken ignore it. I cant afford, physically, emotionally or literally monetarily, to keep going to doctors who dont want to listen so i just dont go to the doctor anymore. As you said, they are the enemy in my mind. The symptom of suffering(and every other symptom) just goes unmentioned and unmentionable and only one person has even surface level knowledge of the things i go through because to be honest theyre just as insinuating that im exaggerating or worse that its in my head as the actual doctors are which is even more insulting as they see me on bad pain days. Or they see what i let them see atleast 😮💨
Lived with pain from severe injuries for the last 14 year, I have lost so many "friends" because they couldn't handle my health and physical issues. I don't look like I'm in pain even when I say I am. I relate to your words, I feel heard. thank you for saying them.
I hear you
I totally relate to your story. I spent 18 years undiagnosed with Fibromyalgia. I am nurse... So I studied a lot and ended up going to specialist after all these years who diagnosed me. I struggled so much to adjust in my jobs, I have fatigue, pain and depression... Even though been diagnosed, my doctor didn't help me... Because I would be dependent to painkillers. So I again studied a lot and found the right food supplements which are helping me and now my symptoms are under control. But was just me... Treating myself... Alone.
I didn’t become diagnosed with Autism and ADHD until my 40’s. When peri menopause hit, all my coping skills couldn’t keep up. I genuinely thought I was going crazy. Dr’s kept diagnosing me with depression. The lack of medical knowledge for women is astounding. You truly have to be your own advocate ALL. THE TIME. Which is EXHAUSTING - and when you are in burnout, damn near impossible.
All the while, your ‘loved ones’ are telling you to stop being dramatic, or get over it, etc. I don’t discuss my diagnosis with my family for this exact reason. It’s lonely, and difficult. People like you, sharing their experience and knowledge helps ❤
I think it’s incredibly easy to blame people with disabilities, especially young women and minorities, instead of actually acknowledging the issues within society. It’s easier for people like this to blame individuals rather than look at their own prejudice and behavior. This is why so many disenfranchised have to wait years for a diagnosis, it actually makes me think of the Emory nurses who recently made a video disparaging their patients and then it came out they were treating their patients horribly
It took 11 years to get a diagnosis for my most visible disability. I'm certain I have a related issue, but I have no desire to get it confirmed due to previous experiences.
This. I've had a tracheostomy for 5 years and have been gaslit by doctors, family, and everyone around me. They don't believe my pain or don't understand it or they don't want to take the time to understand it.
I don't have a community as I get sick easily and got super isolated during covid. Just sitting here on my lonely island feeling so alone. I just wish I had someone who understood.
I so relate. I was raised in a family that did not believe in medical care, thought Everything was mental, and prided itself on not ‘giving in’ to pain or illness. Decades later, I regularly get lectured about putting up with issues so long before making an appointment. The best one was the nurse who yelled at me for walking on a spiral break for three days before going to urgent care. Her angry/confused/shocked face was priceless when she realized just how clueless I was about how to know when to see a doctor.
Even though this was more of an individual/personal look, I relate on a level I didn't think anyone would get. I have a daughter who is medically complex and very limited language, and the amount of times and ways I have been dismissed by being my daughter's voice is beyond upsetting. Thank you giving me a video that sums up my feelings and isn't me just yelling in my car after a terrible appointment or phone call with a provider
I have seen enough stories about kids who were suffering for years because no one belived them. Or about ppl who were living in shame and anxiety because they were afraid to talk about their disorders. There are so many people who never discover what is wrong with them and don't get any help just because they never heard about their specific illnes. It's really much more important than preventing some fakers
As someone that's been in pain all my life: Damn, I felt that!
When I was a kid I couldn't eat solid foods until I was about 4 cause I would just throw up. When I had a date for surgery it just stopped on its own for some reason.
I lost a kidney when I was 10, due to doctors not finding the stone in it until it was too late. No one took my pain serious until it was obvious that my kidney had stopped working and was poisoning me, instead of doing it's job. They found it during the surgery to remove the kidney.
When I started having my period I was in so much unbelievable pain every month that I couldn't go to school, sometimes physically unable to walk. This felt worse than my kidney stone, which a lot of people say is the worst pain they ever experienced next to childbirth. The women around me (especially teachers) were all saying I was overreacting. I lost so much blood I was anemic, but everyone told me I was fine, so I had to be fine, right? I was unable to sleep from the pain, therefore fell asleep at school, wasn't able to focus on class due to pain, so my grades dropped. I went from a pretty confident little girl, to someone who was being bullied and couldn't do anything about it, when before I probably would've punched them in the face. When I went to the doctor (3 years! later) because I heard birth control could help me, he didn't run any tests didn't ask me about my pain just asked "for your pimples, yeah?". Really helpful, thanks doc. I got the bc and it became better! I was able to participate in daily activities again!
I'm 26 now and have surgery for cyst removal and diagnosis of endometriosis tomorrow (can only be officially diagnosed through surgery). They didn't believe I had a cyst at first. The assistant at the doctors office didn't want to give me an appointment. I knew something was wrong, but she didn't believe me and even told me I shouldn't be so sensitive about a little pain. After I blew up at the phone, she told me to come in the next day, but be prepared to wait several hours for them to squeeze me in. Would have loved to slap her in the face with my ultrasound.
I feel so anxious about this surgery. My brain tells me "they won't find anything and call you a liar" even though I HAVE THE ULTRASOUND PICTURE! I have seen a specialist for endometriosis and he told me he's about 98% sure I have endo even without surgery! I'm gaslighting myself at this point, but have no idea what to do about this involuntary distrust of people or my own judgement.
These are just the tip of the iceberg. Just the major pains present in my life and only the physical ones.
If you've read this far, thanks for coming to my TED talk...
I have pain since 2013. Doctors are still throwing their hands in the air. They can't find a reason. I have been blamed many times.
I completely relate to this. I have a chronic disease. But I have had people think I was insane or doing it for attention or people not believe me. Then I would say, “why would I lie about something like this?” I have had the disease since I was little. My first episode was when I was five. I didn’t get diagnosed until I was sixteen. I also do know hot to mask my pain because I am so use to it. I completely relate to this video on a crazy level. Having any disability is very isolating.
I could go on for AGES talking about how I was medically gaslit by medical staff, family, friends, teachers, etc. I will tell the short story that has ultimately led to a lot of issues. When I was 15 (the week of my 15th birthday, which is also Thanksgiving break), I got a UTI. I was prescribed Bactrim and told to take it for the week. Almost immediately after taking my first dose, I started feeling very itchy on my upper arms. I was very interested in medicine so I knew that itching can be a sign of an allergic reaction but was afraid to tell anyone because they would downplay it. I waited about a day, to the point where the itching had spread to my whole body, before telling my mom. She asked if I was having trouble breathing or if I had hives and I didn't so she didn't think it was an issue. For the next FIVE days, I continued taking the antibiotics because I didn't want to risk developing an antibiotic resistant infection. I was completely miserable and had scratched my skin so much that I had pinprick hemorrhages and open sores. I finally convinced my mom to call my doctor and I was right, I was having a prolonged allergic reaction. After this incident, I started having a lot of autoimmune issues. My doctors believe that this event caused my dormant autoimmune disorders to surface. Side note: I had pinprick hemorrhages on arms and shoulders for years before they slowly faded away.
This was a disgusting article for so many people. I know they got so many complaints and never apologised for the unfounded slander they chose to publish that harmed vulnerable people and broke multiple laws. But yeah, people are stupid. I recently lost my best friend of 10 years because she said I talk about my illness too much and make everyone miserable, that being sick is my whole personality. When the reality is that it envelops a lot of your life and you shouldn't have to lie when people honestly ask you how you are doing, you shouldn't have to hide the fact that you do advocacy work to raise awareness of rare conditions, or try to help people understand disability better. The idea that doing this kind of work means you are choosing to be miserable or faking an illness for profit are both ludicrous. Thank you jo for the work you do. You will never have to explain, justify or apologise for your self when you're with the right people.
Thank you so much for this.
I walked through a broken knee as a kid because no one was reacting to my pain and never honestly reacted to anything. Pain is such an insane thing to go through :(
Once again thank you so, so much Jo!
It’s the Daily Wail… something many people wouldn’t consider good enough for use as toilet paper.
Oh my! So on point! I was diagnosed with a rare autoimmune disease at 21. I am now 55. I live with chronic pain and fatigue and loss as my body destroys itself and I lose the ability to be independent. It is incredibly difficult, all of it. I have experienced every bit of what you discussed.
To anyone, with someone in their life who is suffering from a chronic condition, please listen. You don’t need to have pretty answers. Just sit with us in the discomfort. Provide us a place to take off the “I’m fine” mask. I know it’s uncomfortable but the one experience that sticks with me is this….a friend of the family asked me how I was doing, she noticed the hesitation in my answer, took me aside to a private space and asked again. She held my hand while I cried. She didn’t say anything, just sat with me in my pain. Profoundly helpful.
So bad and scary. Another Chronic Pain Warrior here and I had an ectopic pregnancy. The pain was brutal but i did the same thing and between having pain all the time so brushing it off and also having a high pain tolerance. My Fallopian tube ruptured. Thank goodness I took myself to the ER 12 hours prior. Internal bleeding is fatal…. But I spent 12 hours where doctors and nurses went back and forth assuming I was “drug seeking” It was a fucking nightmare. Wouldn’t wish that upon my first enemy! ❤
I really hate my reaction to doctors, hospitals, all that stuff. I've avoided them, for years, because every early experience of my young life; that I remember; was loss, as a child I was never sick. So, I was never near a doctor or a hospital unless someone was dieing.
I knew a girl in high-school who was the opposite, her sisters were older, so they were always at the hospital for a new baby.
I also mask pain, and shock, and surprise, everything. Because, at one point our father became our stay at home parent, and it was never anything. Oh, you just want attention, it doesn't really hurt, nothing.
I spent a lot of time alone when I was a kid, because I didn't have friends on school, we were not completely ostracized, but nobody wanted to be friends outside of school. And it became second nature to react to their interest, as they must want something.
And as an adult, that's a lot to process. That I was told something terrible the other day, while I was at work, and instead of being upset, and crying, my brain didn't even have the option it just shut if off. No, we don't do that, because there is now way what we feel is more important than making everyone else around us feel better. And I love being the bright and chipper person, who makes everyone smile. But, I'd really like to be able to have the rest of my emotions too, and not be told they don't matter, just because somebody else doesn't understand, or care.
That's a part of the reason I quit my psychotherapy. To get a prescription, you need to go to a bunch of other doctors and make different tests (at least in my country). I've struggled with my mental health for so long and faced so many accusations of "attention seeking", that I learned to mask my fillings so well that I just can't stop masking. Every single doctor that I had to visit questioned me. They all demanded an answer on why exactly I was going to psychiatrist even though their job was just to run tests so i could show them to the other doctor, thats it, they didn't need that information. And then they told me shit like "we don't run tests for bad mood", like they know exactly what I'm going through and I'm just exaggerating. They think that if I'm not lying down all day, if I do my hair and shower regularly and go to university, if I'm not actively hurting myself and others, then I'm mentally fine. There is still this mentality where I live.
Anyway, I just got tired of fighting, I don't have enough energy for that. I don't know when I'll be ready to try again
Amazingly I have been accused of faking being an amputee, even when I showed them my prosthetic limb.
There are people out there that will draw a conclusion, and they will simply refuse to accept that their conclusion is wrong, even when presented with undeniable evidence.
I was born with a strep infection. This developed within the first day of my life into rheumatic fever, an infection in the mitral valve in the heart. At 13 days of age, having survived the rheumatic fever, I was handed to my brand spanking new adoptive parents. They were NOT told about the rheumatic fever.......instead of being given antibiotics on a regular basis and being proactive through my childhood to prevent repeat infections, as far as my family knew, it had never happened.
Ive been sick with "unexplainable" illnesses my whole life. As a child I was branded as lazy because I "wouldnt" run or exercise....I actually couldnt but we didnt find that out until I was 47 and nearly drowned to death on dry land.....because the heart condition that went completely undiagnosed and untreated my entire life had destroyed my mitral and aortic valves, my mitral valve was stuck open with a 1cm opening instead of 4cm and by the time I sought help, Im an absolute expert at ignoring extreme pain, Ive had a lifetime's practice, I was and an still am in advanced heart failure. My condition is terminal although I now have 2 mechanical heart valves. My 2 remaining natural valves are leaking and there isnt anything else they can do.
Medical gaslighting is real. We will never know why a succession of doctors ignored a very loud double heart murmur, it was definitely there......and its not as though Id had no medical contact, I had 16 surgeries and procedures done between the age of 32 and 37 (thats another story) and not once did anyone mention a double heart murmur.
Never let your physical pain be written off as mental issues. It shouldnt take a lifetime to get a diagnosis and sorry means nothing when youre dying because they were wrong.
Hi Jo, thanks for using your platform to counter such backward and frankly harmful voices such as those perpetuated by the article you mentioned. I may not have had the experience of being a teenage girl but dang you could have been reading my life story with pretty much everything else. The chronic pain, trauma, masking, not being believed / taken at face value because things aren't simple and I don't present in a way that most people would, the ableism, and the very real damage done to our mental health due to all of the above.
As someone with neurodivergencies and chronic mental illness that also manage to work full time people tend to forget how sick I really am. How much effort I spend on doing normal things. And when I get so sick I have to get sick leave I feel like I can't tell people because they don't understand how bad it really is. Doesn't help that if I say I'm bipolar people think I'm unsafe or dangerous and should not be working with children.
It has taken me a looooong time to get my psychiatrist to actually understand what's going on in my head because I bury it so deep I barely know myself. Finally she has started to understand that I don't over report my symptoms when I fill out forms, I under report when I'm in person because pretending I'm fine goes so deep I can't even admit I'm not fine when I'm in the hospital.
She had a lovely quote the other day after I had had a traumatic doctor's appointment (the doctor was a gem and she did everything perfectly. The trauma was already there) and she asked me why I didn't make a scene. This is a time when it's OK to make a scene. I shrugged and told her I guess I'm good at pushing down my emotions. And she shook her head, chuckled and went "You don't push your emotions down. You stomp on them and beat them down with a baseball bat. It's kinda brutal!"
It made me laugh and made me feel better because now she sees what I do and acknowledge it. And that feels really good.
I can't believe people can find out you CHOSE to have your leg amputated and still think your perception of your pain is exaggerated or inaccurate. Clearly you know what intense chronic debilitating pain is, or you would still have two legs.
Im a 21 year old girl and the level of distrust I have for doctors now is so high. I dread the look they give me when I ask 'stupid questions', the patronising 'she's a hysterical hyperchondriac girl' look while AT THE SAME TIME they INSIST 'ask your doctor anything...why didn't didn't come to me?!' I don't go to you because you look at me like I'm a stupid child every time I ask an unusual question or mention a symptom you consider 'unlikely'
And the absolute lack of non-infantilising compassion is huge; I have arthritis and fibro, and what I got from psychiatrists and physios alike was "the pain is all in your head...pay attention to what your body says...get used to discomfort" while they're talking to a 16year kid scared she'll never be well again, who just needs to be told her life isn't over
I've had too many cases of doctors being stubbornly wrong or downright harmful, and the thing that scares me the most is the feeling that nomatter what I bring to the table, they will always assume they know best, and will act accordingly