The pros and cons of self diagnosis...
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- Опубликовано: 28 июл 2022
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Great video
Commenting before the video is posted? Time travelling witch!
If you wonder, they are there now 😊✨
Thanks!
Great video, as always!
Just a note: I've noticed in a few videos you've said "click the card in the top left hand corner if the screen" but it's actually on the right. You're gesturing to the correct direction but as it's your left when you're filming, that's what you say. But it's then not the "left of the screen". Just FYI.
it's also worthwhile to note that self diagnosis can also look like: "i'm not really sure what's wrong with me but i'm having a really hard time and have for a while. i think i will treat myself as i would anybody else with the symptoms i'm experiencing." you don't have to know what's wrong to help yourself!
This. I get pain in my legs particularly after walking a lot and for a long time i just did nothing. Recently I decided to try out using a walking stick and it has changed my life. I still have no clue what is causing my leg pain and to be honest i do not care as i have already found a solution
This is the stage that I'm at. Many, many tests have come back completely clear/'normal' so I still can't explain the debilitating fatigue I'm experiencing every day. I'm having to help myself, which at the moment means advocating and standing up for my health when my boss is refusing to adapt my working conditions to help me manage my symptoms. He's also referring to my health by putting the word 'welfare' in quotation marks in every email he sends me about my requests to have more flexibility so that I can function vaguely normally and not become an absolute husk of a human. ANYWAY. What you said is so true - it can be so easy to gaslight yourself and convince yourself that without a diagnosis, it might not actually be as bad as you think it is, especially if you have better days and worse days. But we've got to advocate for and believe ourselves, even if we encounter other people who might not! x
I get horrible back pain, and also have horrid balance from chronic ear infections as a kid. I also have knee issues, and often dislocate joints, lately it has be my shoulder and knees.
I self diagnosed my ADHD and anxiety, which are now official. I am self diagnosed autistic, and ptsd as well.
@@jenblack98 I've considered using a walking stick myself for my hip and knee pain but I worried that if no medical professional suggested it to me then 'I don't really need it' and 'I'm just being dramatic'
@@martielupin1981 you should absolutely try it out, there's no harm in trying! i myself don't have much experience in this, but i imagine one could find canes/walking sticks at thrift stores or other such places, to try it out a bit more affordably before investing in a more heavy-duty one, if needed. i imagine someone else more experienced has better tips, but i just wanted to encourage you to try it, as you absolutely deserve relief for your pain - regardless of if doctors suggest it or not!!
When I was 19, I told my psychologist that I thought I had ADHD. He laughed at me and said, no, you have major depressive mood disorder. I said, that's weird, because no matter how many antidepressants I'm on, I don't get any better. I've been on SSRIs for years with no improvement in symptoms. He angrily detailed all the reasons I was wrong, so I walked out of my appointment and went to a psychiatrist a week later, who immediately diagnosed me with ADHD. My life has gotten much better since then. Don't let an unreasonable medical professional bully you into silence. Get a second opinion.
Im glad you walked out and got better treatment. Sometimes psychologists do more harm than good, i had a similar experience to what you described. But it took me a lot of doctor changes to be able to access one doctor that got the treatment right (im also and ADHDer besides some other health issues)
which is why I always find female psychologists and therapists if I can
True. When I was in high school my therapist told me not to get on antidepressants and that there was absolutely nothing wrong with me (even though I told him about my obsessive thoughts). Seven years later and I have been diagnosed with anxiety by my doctor and am on antidepressants. They really work well for me!
@@bennyton2560 ha, my female clinician said there was no way I had ADHD because I was an Honors student who completed a graduate degree. Prejudice knows no gender.
Sadly, many psychologists are clueless about many disorders. I don't go to therapy because of this, and I've tried quite a few times in more than five years. They refuse to believe I have bipolar, diagnosed by an expert psychiatrist, and then the first thing the psychologists tell me is to leave my meds, that everything can be solved with therapy. They also love to hand out depression diagnoses as if that was the only reason someone would go to therapy or as if it were the only thing people can suffer from.
"Adults tend to stop listening to children who say they're in pain continually" is my entire life lmao
Sameeeee
100% this. I see the behaviors of my autistic daughter in myself at the same age... but I had to self-diagnose my own autism because of people like my last therapist, who said, "You're too self-aware to be autistic." Never mind that I have an additional *thirty years* of masking when compared to their other male autistic clients.
that therapist sounds ignorant. ASD is very likely genetic
I had someone say to me "of course you're not autistic, you can hold a conversation and make eye contact.". Yes....because I know people respond positively to this and I've had decades of practice. 6 years later, surprise surprise, ASD diagnosis and a lot of my mental health symptoms improved because I stopped using NT coping methods for an ND situation.
@@KatieM786 This. My fiancée has suspected ASD for years but no one has agreed with her. Very good at masking.
@@caleighrosebud I'm sorry to hear of your loved ones struggles. It was so hard to deliberately not mask during my assessments. I'm in the UK and I got referred to a diagnosis clinic after my umpteenth referral to NHS adult mental health services. I insisted that I wanted to find out whether I was ASD once and for all and I got lucky. You've probably tried this avenue already? Someone said to me that you don't have to have an official diagnosis to apply ND coping strategies successfully, but it's not quite as validating. I found videos and books by Sarah Hendrickx really helpful.
@@KatieM786 ugh THIS! I'm black and non-binary so the chances of being actually diagnosed are... Slim but I've gotten this exact thing quoted at me. I stopped bothering to mask over the pandemic since I have less people to compare myself to and low and behold two different therapists this week have gone '.... Hey bud... Have you considered autism?'
My father diagnosed his own hypothyroidism - he ended up being right. My cousin fought for years to have her EDS recognized and again - she was right. And now she thinks my chronic pain might be EDS, too since it runs in families, but diagnoses take time...and money I just don't have. But when I had surgery recently I shared all of this with my surgeon and he treated me like someone with EDS, just to be safe. Sometimes self-diagnoses is absolutely necessary and saves lives. 💜
Your surgeon sounds wonderful! I had a surgery a couple years ago before my POTS diagnosis, and I told the anesthesiologist that I think I have POTS, and her only response was "Who diagnosed you?" And so when I was honest and said I hadn't received a diagnosis yet, she basically rolled her eyes and said it was rare. And then my surgery which was only supposed to last a couple hours took double the time because my vitals were all over the place and they couldn't get me stable, and my outpatient surgery turned into a hospital stay! D:< I also had injuries, probably because I have hEDS. I do have a POTS diagnosis, but no hEDS diagnosis or anything similar, and so I'm holding off on another surgery I need because I'm assuming it would go the same way -- I'll say I need precautions when handling my body while unconscious, but they'll be like "whatever" since I don't have a diagnosis. T_T
I'm so glad your surgeon decided to err on the side of caution.
I hope your surgery went well.
If you don't mind me asking, did you find the surgeon's approach helpful? And what were the specific precautions for you?
@@uberrapidash2556 jesus christ, so sorry that happened to you
My mom has this weirdly rare genetic condition that means that a blood clotting hormone is deficient. I had it explained to me that her blood was too thick or something, but it’s called Factor X, and so we always warn doctors that I could be asymptomatic for it but I could still have it because we genuinely don’t know.
Self (or maybe “parental”) diagnosis saved my daughter’s life! My daughter was born with an “invisible” lethal congenital defect in her intestines that we didn’t know about until she was a day old. We noticed some scary symptoms at home and when we googled all of those things together the first search result was an article detailing the exact condition she ended up having. If we had just chalked it all up to being scared new parents and over-worrying she would have died within days, but a trip to the pediatric emergency room and major abdominal surgery at 36 hours old saved her life. I’m so thankful that we live in a time and place where I had quick access to that information and that the doctors at the hospital took my “diagnosis” seriously.
It was Hirschprung right ?
I'm sorry to say, you wasted time with that self diagnosis. If your 24 hour baby is in any type of distress, take them to the ER or the pediatrician. I'm surprised you were even home that early. Was it a home birth ?
@@whychoooseausername4763 She had ileal atresia. From what’s I’ve read it’s very similar to Hirschprung’s but she doesn’t have the lasting symptoms associated with HD. Atresia can be present without the additional HD diagnosis. And yes, she was born at home. Where I live you must have a doctor in a clinic sign off that both you and the baby are healthy enough to give birth at home and I had an ultrasound at both 38 and 39 weeks to confirm that. No one saw anything in those ultrasounds so we went ahead with our home birth, which was perfect, by the way. After a terrifying night we were in the car to the hospital even though her pediatrician’s on call nurse and our midwife didn’t think her symptoms were cause for concern.
@@hannylovely5 Are you from the US ? I hear not all midwives are equal there.
Also, that's exactly the risk of home births. It's a small if, but if something goes wrong, you don't have a full OB and nonatal team literally in the same building.
@@whychoooseausername4763 Yes, no reason to choose an user name if you are just strolling by.
@@hannylovely5 Thant is an amazing story!!! Thanks god you googled it and did not listen to the medical persons present. It must been quite hard thing to do as a new parents, but your intuition was strong...And I feel like you were guided to the correct information so that your child could be saved 💗💗💗 Love the happy ending!
The part about not realizing how the brains of normal people work is what made it so hard to get my ADHD diagnosis. I wasn't hyperactive as a kid, and generally did okish in school. Doctors just thought I was unmotivated, and i didn't know how to explain what was going on, because i thought this was how it was for everyone. It apparently is not.
for me the hardest part was seeing my peers hitting milestones and had achievements in life. I always knew I was different but didn't know what held me back exactly
People really need to get it out of their heads that performance in school is any indicator of ADHD. It is the reason my parents thought it was silly when I told them I wanted to get diagnosed. Turns out they both have ADHD too. Thankfully so did our family doctor so we got really excellent care!
Edit: mis-spoke, sorry! Bad performance in school can be a good indicator of ADHD. It is just harmful to assume that good performance means someone must not have ADHD.
@@Ariel-ps8je it tends to be an indicator, since it can be really hard to focus or concentrate on subjects we don't find interesting. But I actually was interested in stuff in school lol
@@WowUrFcknHxC yes, you are right! Thanks for the correction. I meant to say that good performance in school is a harmful indicator to the assumption that a kid is neurotypical. Of course, ADHD is a learning disability and so bad performance in school is a good indicator. Very silly of me to say otherwise 🤦
I also did ok in school, not hyperactive, and was diagnosed at 23. I had no idea what I was going though was any different, though I definitely felt different. ADHD was something I would never thought to look into before.
My wife had a doctor that kept dismissing her changing symptoms as her diabetes. My wife does a great job at controlling her diabetes, she just knew it was something else. She found a different doctor that literally on the first visit felt a tumor in her neck that turned out to be thyroid cancer. Luckily they removed it before it spread. If my wife would have listened to her first doctor, who knows when the cancer would have been discovered. If you don’t feel like you are being listened to, go elsewhere (if you can), it could save your life!
phew so glad she is saved!
@@bennyton2560 thanks!
I agree with pretty much everything said in this video, but I do have an additional concern. I have OCD, diagnosed for 10+ years, and it’s something I’ve struggled with a lot. Particularly with the rise of tiktok, I see a lot of misinformation spreading about OCD in the name of advocacy, often spread by people self-diagnosed with the disorder. This is really harmful and upsetting. While anyone with an official diagnosis can spread misinformation, and anyone without an official diagnosis can be a good advocate, I would especially caution self-diagnosed people to ensure information they share about their disorder is factual.
There is a problem with a lot of people faking having disorders on tiktok for clout and this often involves them playing into stereotypes and misrepresenting the disorder. Luckily they are in the minority and most self diagnosed people aren’t just doing it for attention but they are a very loud minority which means they are influencing a lot of people and spreading false information. It could lead to someone with the disorder to think they don’t actually have it because they don’t experience the comical symptoms the tiktoker is portraying or someone without it thinking they do have it because the tiktoker is acting like they have the disorder just because they’re a little bit quirky. And then obviously it will just misinform a lot of people which will lead them to not believing someone who actually has the disorder or treating them wrongly.
Can't forget how when you're fat, instead of being diagnosed with things, you're told to simply lose weight! I'm lucky that when a strange health thing happened to me, my weight was not a factor and all of the doctors and nurses took me very seriously and found, then treated, my cancer. But my sister was not so lucky, and we didn't know she had cancer until the blood clots had already reached her brain. None of her symptoms before that registered as anything but "fat person has a health problem" which really hurts.
Luckily my self-diagnosis of possible adhd and/or autism seems small in comparison, and something I am working toward getting diagnosed! Thanks for the video.
To be fair, being overweight can cause a lot of issues to your health. So it is a valid option to lose weight. Pain, stomach issues, and some mental health can all stem from being fat. Also heart disease and such, too. So, I get it's rude, but it is valid to tell you to lose weight.
sorry for your sister
@@oldladytrexarms no, fuck off with that bullshit. losing weight can certainly help symptoms but refusing to do any testing or look further in to the symptoms in favor of just telling someone they need to lose weight is how countless people are killed or disabled by unchecked illnesses. not to mention weight gain/inability to lose weight is _in and of itself a symptom_ of many illnesses.
the fact that you can come on to a comment of someone whose sister _died_ of *_cancer_* because of medical fatphobia and say "well being fat _is_ unhealthy" is fucking appalling.
@@oldladytrexarms Losing weight doesn't suddenly solve all yours problems like you're describing and it's not easy to lose weight for many people. It's actually more common for fat people to get eating disorders, and comments like these are actually more harmful than helpful.
My chronically ill circles are full of people who figured out their illness before their doctors. My aunt recognized my RA before any doctors thought to test for it.
I feel most people had to self-diagnose to a certain extent in order to get to an official diagnosis, anyway. Not always, but I would say it's very frequently a necessary step toward getting the help in the first place.
Yep. Part of self diagnosis is paying attention to your symptoms and researching them, and without that then it's much harder to get diagnosed. I think people sometimes assume that doctors will always notice it first when oftentimes it can actually be the patient who figures it out before any doctor notices.
As long as you actually go seek medical help for you problems, it's fine to self-diagnose. It can be a helpful tool for the doctors of where to start.
But if you self-diagnose and never bother going to see a doctor about it, there might be some dangerous symptoms you've misinterpreted. That's why it is adviced to go to the ER if you believe you might have a heart attack, even if you suspect it MIGHT be a panic attack. And if you frequently experience panic attacks, you should always go to the ER if it feels in a different way, since it might be a heart attack that you'll misinterpret the symptoms of.
And personally, I was given a lot of anti-depressants for 15+ years when I actually needed ADHD-medication. I take both, but boy did the ADHD-meds change things! It wasn't only depression, it was inattentive ADHD also. I could've saved myself from A LOT of misery had I been diagnosed at 16 instead of 33....
@@SamirCCat my uncle thought he was having a panic attack and walked (2 blocks) to the hospital anyway. Which was good since he was having a heart attack. Smoked his last cigarette on the way to the er that day.
@@nicokelly6453 ah yes, doctors who all have time to monitor your symptoms when you see them twice a year /s
Yes I went to the doctor and he literally asked me what I thought it was. I think doctors do expect patients to have researched their symptoms a bit. If people didn't self-diagnose, we would be going to the doctors about every minor thing (of course I mean sprains, cold etc not disabilities and more serious/complicated illnesses). No GP knows about every problem, especially ones that impact minorities or women only/disproportionately
I'm currently trying to figure out if I have ADHD.. I was pretty sure I have it and I've just had my first appointment with a psychiatrist to go from self diagnosis to medical diagnosis.. I'm already chronically ill so I'm just adding another condition to my health tab 😂
Great tip for if you're being ignored by doctors: bring a white guy with you to appointments where possible. They don't even have to talk! Just have them in the room nodding along. Some doctors just don't take you seriously if you're not a white guy.
I'm in the southeast US, bringing a white male with me is the ONLY way I've ever been taken seriously in medical and mental health situations. Thankfully my husband fits the bill but before I had him with me I was ignored for over a decade.
Wow that is so fucked up that you have to bring a white guy with you to be taken seriously!
Omg I just had my first appointment trying to get a diagnosis for ADHD too!
Bro I only recently realized I definitely have ADD. Only when the DON at work was explaining the symptoms and I was like.... oh, OHHHHH
Recomment the channel here on youtube How to ADHD, whether or not you have it, there will probably be stuff on there that will help you in your every day life! :)
"Things are hard for me right now, but I am trying my best" I had to pause to cry for a minute, I felt that so deeply.
Chronic illness are so frustrating sometimes.
They really are. I’ve been diagnosed with POTS, anxiety and depression, and tentatively self diagnosed with ADHD and ASD, plus doing research into possible OCD and maybe an identity disorder due to trauma. It’s a real struggle and so often invalidated or makes people feel invisible. I see you, shit sucks, and I’m so proud of you for everything you’ve managed to achieve, tried to achieve but maybe failed at, and have yet to attempt but have recognised. Keep going 💖
*hugs to you*
@@bec5006 I hope you've progressed on that path. ASD+ADHD too often result in trauma.... And some professionals refuse to see anything but the trauma then.
And if you have DID, I hope you've started learning your inner system. I have a good friend that is a system, and I'm kind of waiting when I'll meet some of her other personas - though I don't really wish the effects of the change for her. Just that they too will trust me enough to show themselves to me.
@@MiljaHahto thank you! I have, I’ve been diagnosed with ADHD and I scored 145 on the RAADS-R (autism) test when you need a minimum of 65 to be diagnosed, so pretty sure I have that too. I worked through my identity issues with a therapist and if I did have a split sense of self, it’s merged now. I’m doing much better than I was a year ago. My chronic illness is still disabling- same with the ADHD and ASD- but I’m learning how to work with it and my subsequent limits.
@@bec5006 Congrats for the merge! And diagnosis too. ADHD and ASD have plenty of overlap, I assume it's only a matter of time before it official becomes neurodeviant spectrum.
Self diagnosis is how I learned I have complex PTSD. I had it confirmed, but the only reason I got an official diagnosis is because I looked into it and asked. It opened up so many resources for me to finally have a label for my type of trauma
I did that too. I think if I hadn't educated myself and specifically asked to be tested for c-ptsd, I would never be correctly diagnosed. However, a month a ago my therapist basically gave up on me, claiming that my situation was "too complex" to be fixed.
@@_maia_m I'm sorry your therapist did that. I hope you can find a better therapist
same but with ADHD. My therapist saw my C-PTSD first, but I've actually got both. (There is no untramatized ND person I would say)
@@_maia_m Too complex for her. Doesn't mean it's too complex for all professionals to treat. Also one can be come better even when a total fix is not attainable.
Man, the ADHD example hit me HARD. I self- diagnosed years ago, and have been struggling to get the ACTUAL diagnosis. It's always, "Everyone forgets stuff, " or , " Maybe you're depressed. "
I use coping strategies, but it's getting more and more discouraging. Life isn't supposed to be this hard.
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Check out the women and ADHD podcast. We also have a forum :)
I feel ya. Only recently did one of my ADHD friends told me that I definitely have ADHD. It explains so many things in my life like starting schools later, learning difficulties, needing extra time with things etc etc.. I still struggle with my mom accepting i do have ADHD, not just forgetfulness or lazyness and not just me excusing my behaviours. Keep going mate, you'll get there eventually where things work out!
Also the RUclips channel 'how to ADHD'
Yes, @michelle Roberts, exactly this! I'm always getting told that I don't have ADHD and that everyone has or does whatever the symptom is that I'm describing at the time. I'm sure they're trying to be reassuring but it's so frustrating when I'm reaching out and trying to describe what an impact something is having on my life, and it's just brushed off like it's no big deal 😞 The reality is that ADHD impacts everything and can make life really difficult!
If you're reading this and are disabled either physically or mentally/psychologically... just wanna say have a good day! Keep on keeping on.
You, too, Kyle. x
Thanks, you too!
you as well! drink water folks
The "I guess we'll just sit here awkwardly" one is very relatable. Got diagnosed with depression, wanted to get help (but have an allergy to dairy which is in mist pills,) and the doctor legit doesn't see the harm in prescribing me this allergy. I had to try far too hard to not face palm in front of the doctor. Especially to the logic of "but did you die though bro". 4 years later and still don't have pills. Not every NHS problem is funding.
yup, why do so many pills have lactose in it? i just cant take many of the generic brands and do have to pay more to access the others. I only figured it out after a few unsuccessful tries (and no one thought to warn me about the pills, literally none of the doctors did). I have known i was lactose intolerant since i was a baby, it has not changed after 22 years. Seems like none of the many doctors i had to go to (multiple chronic illness) know that treatment is not effective if my body cant digest the meds
@@arielruby13 it's so frustrating isn't it? I have to pay more and I'm limited to the children's version of medications because the liquid versions don't have dairy or gelatin in. I ironically discovered the milk in meds after taking anti diarrhea meds. 😂
I would try finding a psychiatrist who does ECT or electroconvulsion therapy. It’s generally used for medication resistant depression but I would honestly recommend it to anyone who has experienced long term depression. It has completely changed my life.
Happy pride month. I have several chronic illnesses including CFS/ME and people get so chapped when I refer to myself as “disabled”.
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people get so mad when i say i’m disabled because i have fibromyalgia, hypermobility joint syndrome, and hashimoto’s thyroiditis. like bro… i know the thyroid one might be confusing so let me elaborate; without medication to correct it, my muscles tighten and the pain i feel is much worse than usual, like it hurts to move at all.
@@haileyhowson8350 I've never heard of that symptom with Hashimoto's. I've got underactive thyroid so I possibly have Hashimoto's too but I've only been told about symptoms like tiredness, low voice, changes to hair texture. I'm gonna do some more research cause I've clearly got some knowledge gaps about my condition. Thanks for the heads up.
I had a boss once tell me I wasn't allowed to call myself disabled! I was like "No, I am though." and she didn't push it, but it certainly was memorable to be told I couldn't call my disability a disability. I think people are so set in the idea that only visually physically disabled people are disabled that anything else doesn't fall under that label.
Same same! My flavor is Lyme Disease.
My cousin had a brain tumour as a baby that all the doctors overlooked. My aunt knew something was wrong, but they all labelled her as 'paranoid mother' who read too much stuff on the internet. Finally she found someone that listened, and she was right. Because of her diagnosing her baby, he was able to get life saving care.
As an afab person with autism, adhd, and an S rank in masking I well recognize the importance of self diagnosis.
"S rank in masking" ajdbisbd that made me laugh
Lol, S Rank in masking, I'm definitely borrowing that phrase for myself! 😂🥰
“S rank in mask”. I like that, I would like to steal that lol
@@Allie3000-uu6jc Feel free.
After 10 years of fainting I self diagnosed my POTS by watching your videos on the topic. Found a doctor who officially diagnosed me a few months later.
That can be another category: Jessica diagnosed 😬
I have some other chronic illnesses that are comorbidities of POTS, but when I started fainting, no one even suggested it. I saw so many different doctors and got run around in so many different directions. It took me complaining to a friend who also has it, and she went, "well, that's normal with the dysautonomia so bear that in mind." And I was like, "huh?" And she said, "you have POTS, don't you?" and I said I didn't think so, and then we started talking symptoms and she was like "girl you have POTS." I had an appointment with my endocrinologist a few days later and I mentioned it to him, and he was like "uh yeah that's definitely POTS, why have none of your other doctors considered that? It goes along with your other conditions??" Took years of fainting and would probably still have no diagnosis if my friend hadn't said that.
yes - my friend knows she has POTS, she literally meets the diagnostic criteria (heartrate goes so 160 when she stands up), but when she was trying to get diagnosed the RN was incredibly incompetent and thought you had to check every single box to have it, when you only have to meet 1.
I feel like a dork giving into my anxiety and realizing all the times in my life it has caused me issues. It wasn’t until I turned 40 that I finally accepted that it just might be linked to being sexually abused by an older cousin when I was little. Now I proudly carry my “Me too” card and embrace my anxiety.
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It's really fun when people tell me that I can hear fine because I never paid for a doctor to specifically measure exactly how poorly I hear.
How frustrating is that?? How do they know how well you can or can’t hear??
That is so dumb. Especially when I feel like it would be quite obvious if someone has hearing problems even if they haven’t been tested for it.
@@rachelcookie321 it's not always obvious. Then again, my problem is the opposite - it's easy to think I don't hear well, when in fact I not only hear what I need to, but also all the damn disturbing sounds as well, making it often hard to distinguish what the other person said. Normally people have a filter, I don't. (Apparently one part of my 'tism.)
Just as I was looking into getting an ASD diagnosis, I saw a video online from another late diagnosed woman who laid out why official diagnosis can actually be harmful (including medical practitioners and workplaces discriminating against you). It is also really expensive! And there's no treatment! But the online community I've found is welcoming of people who have self-diagnosed and are eager to share their experiences to help others. 💜
I literally commented the same thing! if there's no need to cure then I don't need a dx
I can attest that an official diagnosis has only been harmful for me. I tried to to talk to my doctor to get a referral so I can be retested and get undiagnosed but she basically just told me I should be thankful for my diagnosis because lots of people are struggling to get one. I’ll make sure to enjoy it while it ruins my life, thanks.
I have been diagnosed with ASD and I'm just not gonna tell my workplace. It's my medical information, so they have no right to demand an answer to the question anyways
I've been incredibly relieved to have a diagnosis though. After almost 20 years of not knowing what was "wrong" with me, I finally knew. And I was only diagnosed because I had requested to go to therapy for panic attacks and mentioned that I hated changes during my intake which made them realize I might have ASD. My general practitioner and I thought it was panic disorder but no, just ASD and some trauma stemming from being bullied for being different. Without my official diagnosis, I never would've known
Personally, I somewhat regret my diagnosis (autism). Why? It's cause I'm a British trans man, and if you know anything about transphobia in Britain right now it is the fact that autistic trans people like myself, esspecially AFAB folk, are being painted as "poor lost sould that are too stupid to realise they are being brainwashed by the trans agena into doing irreversible damage to their fertility" (yay ableism, transphobia, AND bigotry towards those with fertility issues!).
So now I'm left in a situation where I'm constantly worried that I'll end up encountering a doctor who will refuse treatement for my dysphoria because of my autism, all while not actually getting any help for my autism cause I'm "high functioning" (ie. I can speak pretty well, and my symptoms don't bother other people, how they affect me doesn't seem to factor into it). If I could have existed as someone who was self diagnosed then I would have, at least until I had finished my medical/legal transition up to the point I was happy with, but the discourse around self diagnosis made me feel I couldn't do that.
Ouch. I can relate emotionally if not factually. I'm 90% sure I'm autistic and I'm transmasc. And I'm planning to emigrate to a country where I could transition and get diagnosed, in that order, partially because of the attitude you described which is not unique to UK (although I suppose it's worse in UK than a lot of countries).
@@kaworunagisa4009 Yeah, transphobia is all over the place just now :/
oh friend. Sending you much love. Self-diagnosed "high functioning" autistic here, and gender queer. I cannot even imagine your struggle. 💓
Dude. Same. I lost my best mental health doc because I asked for help with dysphoria and was told it was probably just my ‘mental conditions’, nothing ‘real’. I really hope you find somewhere you can get support as you need it.
I’m in the US and my autism diagnosis has both helped and hurt. On one hand, it will be easier for me to receive mental and occupational healthcare because insurance has a “reason” to cover it. Because many people, including doctors, do not consider me fit to be a parent, I might have an easier time getting the permanent birth control that I want. I know, I’m autistic and I have sex! How strange.
Anyway, the same sentiment also will bar me from adopting and fostering kids, which I luckily do not want to do. It will make it more difficult for me to address the physical issues I’m facing because doctors may think I’m… idk, not being correct about my symptoms. That’s compounded by the fact that I’m a non-white, and non-white passing, Latine person. I’m also going to have an extremely hard time if I want to immigrate, because many countries do not allow autistic people to immigrate (especially countries with public healthcare and/or countries that pride themselves on having very good health).
After two years of waiting for our son to be diagnosed we found out the Peadiatrician had started her referral letter with “Please reassure these parents their child does not have autism”. I have no words! Within 30 minutes of his formal assessment the specialists said there was no doubt he is on the spectrum and also probably had ADHD. We were on site for a full day of assessment not a 30 minute look over and pat on the head. He has several acronyms allotted now some because the initial diagnosis took so long to be clarified other issues with mental health arose as we weren’t able to support our son as he needed.
i don't understand why autism is such a hush-hush subject with many medical professionals, as it affects so many different aspects of one's life and a diagnosis helps so much with figuring out what can help and where to find more answers, for everyone involved. i just.. don't understand.
@@komiaribs8269 It's also not that scary of a diagnosis. It's not cancer. It's not going to kill you. It's not a progressive illness. Your kid was the same amount of autistic their entire life, you just have an explanation for behaviors that were always there, so you can actually start understanding and learning to better support your kid.
Thank you for doing this for your son. I am a 24 year old autistic woman who wasn’t diagnosed until last year. My mother had me evaluated in kindergarten, but heard very similar crap from the first provider and didn’t have the resources to push further. I don’t blame her, but I blame the medical system for failing me. Having known earlier, I would have made some different decisions and sought out different support and would probably be a college graduate by now. All this to say, thank you for advocating for your son so he knows himself as well as possible and has access to support from a young age. Wishing you both the best.
@@komiaribs8269 mostly because of others ableism, and some people very much like to reinforce the stigma and treat autism if it was the most negative thing ever. In my opinion, there is no negative thing about autism, the bad thing is society refusing to treat autistic people as humans with rights and needs. Evry human has needs, but not everyone has the same needs, all kinds of people should be welcome in society and be respected and supported
@@arielruby13 exactly!
in primary school my mum when to the headteacher and said, “i think my daughter has dyslexia do you think you could test her or tell us where we could go for one”
she said too my mum that “she not dyslexic you’re just didn’t teach her how to read”
in high school i was takeout of class by a teacher to do a test, didn’t know it at the time, but it was for dyslexia which i had…
How frustrating!
Self diagnosed autistic here.
Reasons why I have been denied to have it looked into by two psychologists:
1. I don't believe in diagnosis
2. You can make eye contact
The best one yet:
3. You have friends
Yes I have friends, what does that have to do with autism? Like seriously *eye roll*. Nothing explains my life experience better than autism.
And I think that self diagnosis is great. Unless you have a different psychological condition, which makes you think that there is something wrong with you, when there isn't.
Most people do not diagnose themselves "just for fun", it is because they have an issue that they have identified in their life and this diagnosis, to their knowledge, is what fits the best.
Exact same experience here ...
100% relatable.
This was SO GOOD: "Most people do not diagnose themselves "just for fun", it is because they have an issue that they have identified in their life and this diagnosis, to their knowledge, is what fits the best." Totally true!!!
my high schoolmate got a "but you had good grades and went to the best high school in town". To which he replied, "those tests didn't take brain cells" lmaoo (But srl a lot of autistics are very intelligent, and he did get a dx)
@@orangesnowflake3769 make ND friends then!
when I was 15 I started throwing tantrums (or so they said). basically, my family really didn't care, my grandma gave me some medicinal teas for stress and I kept going until I was 17, when my aunt, who didn't live with me and is diagnosed with clinical depression, looked to me for like five minutes and said ro my mum "if you don't treat this girl she's gonna be like me". my mum then finally accepted my complaints and we find my first neuropsychologist.
long story short I have adhd and anxiety as a comorbidity, and my "tantrums" were panic attacks. I'm 20 now and still in therapy, but my family really didn't believe until someone who had terrible experience with mental conditions told them.
I’ve had my pediatric doctor actually tell me it’s okay to self-diagnose as long as you do research and use common sense. She was so understanding and listened to me to well. When I said I was SURE I had Hypothyroidism and wanted my tests redone (because the specialists all said I was “fine.”) she did it for me. And guess what, I have Hypothyroidism. If I didn’t do my research and listen to my body, I would be so SICK right now, maybe not even alive.
I’ve been medically gaslit (by doctors) most of my life, so I’m always researching and reading case studies, etc. When you go to a doctor, with basically a pamphlet of case studies, and research, they (sometimes) treat you as more of a person than usual. But more than just that, being able to self diagnose when no one can figure out what’s happening, helps a lot. Like stated in the video. I’m able to find out triggers/issues and avoid them. No, I don’t have an official diagnosis for some things, but I feel better because I can manage it on my own based on the research I’ve done. Especially when there’s not that much research done on it to begin with. The doctors don’t know anything since there’s maybe 10 case studies on the topic max (not talking about Hypothyroidism here btw). “What’s that I’ve never heard of it?” they would say to me. I’ve given up spending thousands of dollars trying to get an answer from someone that doesn’t know anything. Might as well try myself.
But like stated in the video, it’s hard to accept that I am disabled because I’ve never been diagnosed for some things. Even the things I am diagnosed for, It’s hard to acknowledge…kind of just because they’re not visible disabilities. I feel GUILTY using a handicapped BR when I’m dizzy and overwhelmed. I’m basically passing out and I squash myself into a normal BR because I’m not “disabled” enough.
Don’t feel guilty using the accessible toilet! I can walk fine, but what I can’t do is run, kneel or squat. My knees won’t unbend. I got stuck in a regular toilet and had a full on 3 stooges episode in the stall because the toilet was too short and I couldn’t get up! I’ve had knee problems since I was 14 but just to meet me, nobody would know. Those grab bars are there for a reason!
I have had exactly the opposite result from showing up with notes, case studies, etc. Labeled a hypochondriac.
@@maryeckel9682 omg we can literally never win 😭🥺
@@chrissymorgan1457 same thing as you here, but since i was 12. i had 2 surgeries, but since my scars are not visible people treat me like shit when i try to not suffer so much. i can squat, but it pains me a lot, and i take great pain in clibing stairs
@@maryeckel9682 find a second opinion pal
I think mentioning how you were misdiagnosed ties in with the main theme of this video. Getting a diagnosis is a process regardless of who does it! If anyone is looking to self-diagnose, do your research, and anyone who is looking for a professional diagnosis, do your research. Regardless, I think that doing your own research allows you to see multiple perspectives and learn how to best care for yourself and your specific needs!
I'm glad you mentioned intersex. I'm intersex and find it hard to see a doctor. After they REALLY look into what it is (one of four human sexes - I know I'm going to get it for that statement), they panic and say "I'm not equipt to take you on as a patient. Please seek treatment elsewhere." that's a direct quote. I had limes disease for over a year before I found a N.F.P. clinic that would see me. The doctor had me wait 4 more months whilst she gathered information. Then I was tested, despite being told they were "nearly 100% sure" I didn't have it. The test came back positive for an "acute infection" of L.D. Because it took over a year to be treated, the infection has rooted itself and I now require long term treatment.
It was so much fun to be treated as less than human or less than period.
Thanks again for include intersex.
❤️
I was carded this monday. Going in a museum that had a disability discount on the entrance fee. I showed my disability parking permit. And everybody was happy. Me especially because they sold icecream and it was 33 degrees celsius.
The museum was in germany, I am danish.
My sister realized that goiter she had for years was growing. When she turned her head a certain way, she couldn’t breathe. She insisted to her doctor that she needed a scan. Thyroid cancer, stage 2. A supposedly 2 hour surgery turned into a 6 hour surgery, because of an extraneous nerve to her vocal cords. Her vocal cords wound up 1/2 paralyzed for 6 months. But after radiation treatments, she’s been cancer free for 10 years
Thanks for this video, I needed that. I am currently self-diagnosed (with autism) but working on getting a formal diagnosis, which is frustratingly difficult to get since practically no psychiatrists here (Denmark) will even see someone for an evaluation once they're over 18 (because, obviously autism is only for kids, right...) and waitlists are incredibly long. Meanwhile I'm trying to relearn all of my life-patterns so that I can be less exhausted by everyday life, and will be able to finish uni and get a job soon. Luckily, in the mean time, my doctor has been amazing with believing me, giving me a referral, and providing help to figure out learning healthy ways to structure life. But a lot of my struggle has also been letting myself acknowledge that I'm having a hard time and not just brush it off and work harder, like I have for the last 25 years. So thanks for posting this video, it really helps with that last bit.
Same. I've been waiting 4 years for my diagnosis... or even the assessment to start the diagnostic process!
I'm 25 and likely autistic as well! Don't be too hard on yourself, I came a long way from learning I have (physical) limitations and would rather live better now
I'm middle-aged and they refused to even test me. Not because they think I'm not autistic, but because apparently I've managed "too well" to need the diagnosis even if I have it.
One way of cutting public resources, I guess.... Just diagnosing me some 20-40 years ago would have saved more.
Even smaller things fall into this!
I thought I had lactose intolerance, so I adjusted my diet carefully for a full month. When it didn’t get better, my dad suggested it was an ulcer. He was right, and a simple medication makes life so much better!
I found that it works well when you tell a doctor "I am experiencing symptoms that line up with X (disease, disorder, illness)".
i try that but they're still so dismissive so i just continue with my self diagnosis
I am technically Self diagnosed as autistic. I have had my ADHD nurse (who also works in the adult ASD department) say "Yeah, she is definitely autistic" but i still have to wait 2 years for a formal diagnosis. It is ridiculous how long waiting lists are.
Looking forward to this video! In the last year after a ton of self research I have diagnosed myself with ASD (and I already have an official dx of severe ADHD) but I specifically choose not to pursue official ASD diagnosis for a lot of reasons, mainly financial, but also reading some horror stories about losing control over medical decisions, compounded with the fact that I don't see any benefit or treatment that I need to reference from having said diagnosis, so the decision was not made lightly! The community has been very welcoming of me regardless and I've learned so many great things to help with my ASD in my day to day life from them, so I'm content! Happy disability pride month Jessica!!
I'm curious what the "losing control over medical decisions" in connection to ASD is whereever you're at. I'm diagnosed with ASD, and when I was offered to try Abilify, I did give it a go to see if I could benefit from it - and in a way it did have significant positive effects - but I thoroughly disliked that I didn't feel like myself anymore. My psychiatrist strongly advised I keep taking it, because in her opinion the positive effects outweighed the negative ones. But I disagreed and said I don't want to take it anymore. She readily accepted it. If she had not, there would've been no way legal or otherwise she could've forced the medication on me.
@@augustaseptemberova5664 The issue comes from the fact that a doctor can very easily declare you incompetent and then you do loose most of your rights. There are also some countries where an autism diagnosis can prevent you from medically transitioning, Can lead to a do not resuscitate order being placed on you without consent, You cannot immigrate to Australia (At least it is extremely difficult), An autism diagnosis can prevent you from fostering amoung other things.
@@jenblack98 Oh, now I understand. Luckily in my country, no doctor can do that, only judges under advisory of the ethics committee. Thank you for sharing.
@@jenblack98 why am I not surprised you can't immigrate to Australia with ASD diagnosis 🤦♀like jfc, good ol' settler-colonial Australia
My English friend lived in Australia for many years with an ASD diagnosis. Is this policy a recent thing do you know?
Oh God not to spam-comment but my dad got really sucked into the *dark* side of "self treatment," and it snowballed into him reading quack websites and stuff to the point that he got convinced that drinking hydrogen peroxide would keep him Healthy Forever and Never Get Sick Again, and convinced me as a high schooler to do so as well.
...please be careful about getting your treatment recommendations from the internet.
the difference between that and what Jessica is talking about though is the trustworthy-ness of the sources. she even says in this video if you're going to take medical advice from the internet make sure it's from trustworthy sites run by actual medical professionals. a lot of the sites and forums you're talking about usually speak about medical professionals and officially researched treatment methods with derision and mistrust. like those people that think the covid vaccine will kill you and the government doesn't want people using ivermectin cause they want to keep us sick
@@Ari_C Yeah I'm not accusing Jessica of anything. When she cautions to be careful about the internet, I'm just sort of agreeing with her by adding on my own experiences as a cautionary tale.
Ooo I got one for y'all! I am "self diagnosed" with ADHD... Found out recently I actually do have it technically. BUT a doctor wrote me off as not having it when I was a child because my parents asked them to so the school wouldn't pressure them to put me to be on medication! And right now I can't afford to see a doctor to get it diagnosed. Lemme say looking back at all the struggling I went through with school work and college is a frustrating thing to swallow. Because if I'd known I could have done SO much better than I did.
I mean the answer has to be yes, right? As long as you’re educating yourself before you come to your conclusion. (For example, if you’re self-diagnosing a mental condition you should be looking at the DSM-5 as well as researching the condition and similar conditions to get the best idea of where you fall)
🙌❤️
The problem is many conditions have overlapping symptoms and so knowing which one applies to you is extremely difficult. Also, there’s regular, sub-clinical, and clinical levels of different symptoms and knowing what is ‘normal’ is not something we are trained in whereas a professional is
@@marie-bernadettebenedict3007 That still doesnt matter. If someone thinks they're autistic but are actually ADHD, & the overlap was what made them think wrong, they will still benefit from accommodations & help aimed at those overlapping symptoms. Do you think humans are so stupid that we need another human to tell us what our symptoms are? No, we can tell very easily, & it doesn't matter at fucking all if someone mistakes one similar diagnoses to another, they will still be getting help for their particular set of symptoms, not for some nebulous set of DSM-5 guidelines that don't apply to them
@@marie-bernadettebenedict3007 If you do a deep dive into Hypothyroidism/Hashimoto's, you'll find that diagnostic clinical levels are EXTREMELY out-of-date, calculated decades ago and using information that will exclude a large portion of people that would benefit from thyroid medication.
Not surprisingly, thyroid problems typically affect women, a population known for getting accurate, well researched, and appropriate care. /s
Especially because aren't POC, any gender that's not a male, fat people, etc. underdiagnosed? And doesn't the process take years and is expensive? I've never gone to be diagnosed with a mental disorder so please correct me if I'm wrong.
Tips for people with a self diagnosis, mental or physical:
- Don’t “settle”. Keep researching your symptoms and possible answers, even if you think you’ve already found your problem.
- Keep track of your symptoms. For mental illnesses, you can find the GAD-7 (anxiety), PHQ-9 (mood), and DES (dissociation) charts. These are the same tools professionals use to screen for mental disorders and are based on self report. For physical disorders, record blood pressure, heart rate, pain levels, and other stuff you can think of at regular intervals. Having a record of your symptoms over time can be helpful to doctors.
- Use non-medical, non-invasive methods to help your symptoms. For mental disorders, this could look like using accredited/reputable online resources for tips one managing emotions. For physical disorders, this can look like using braces/bandages/KT tape. I’d be careful about OTC medications that aren’t common ones, but if they do help you, record that!
Self-diagnosed autistic person here. Not only do I lack the financial resources to access health care in the United States, I feel that the medical community as a whole is still kind of struggling with the idea that autism doesn't just exist in children. The vast majority of the research and resources for autism are directed at autism in children, with very little regard for the adults that those children grow up into. There are surprisingly few professionals with any experience diagnosing adults with autism, and it's of course harder to diagnose because autistic people learn how to mask their autism as they mature in a society that expects them to act non-autistically. I hope to one day navigate this minefield successfully, but the lack of an official diagnosis does not make my autism any less valid. I know what is happening in my own head better than anyone else does.
Thank you so much for this comment ! I'm on the way to self diagnose as autistic (still doing lots of researchs) and I struggle to find self diagnosed autistic people, your comment really makes me feel validated !
Totally agree, and it's just so frustrating when you run into medical biases (like professionals disregarding adults with (undiagnosed) autism) that interfere with a lot of people potentially getting helped (if they want to)
I have a similar experience. I’m currently self-diagnosed autistic and ADHD, and in the process of being professionally diagnosed. Now that I have hit on these diagnoses, I’m noticing so so many traits that apply to me and that I have exhibited for a long time that I just haven’t noticed. Being female, neurotypical-presenting, very good at masking and already being diagnosed with anxiety, depression and POTS made it difficult to be taken seriously when I questioned if more disorders applied, especially with so many symptoms and traits overlapping. In Australia, the current estimated wait time for an appointment with a specialist who is able to diagnose you is at around a year. I am already dysfunctional enough and am planning to go to uni next year, and cannot continue living as if I am neurotypical when my brain and body clearly do not respond to that well. I’ve been acknowledging symptoms and tentatively acting according to what appears to work best for me using common austism/ADHD coping mechanisms as a guide, and they’ve helped far more than anything else ever has.
@@RozaVeronica Same! I’ve struggled a bit so far because I didn’t “obviously” exhibit autistic traits as a child. I did, but due to trauma I quickly learned to mask so much that even I couldn’t tell until recently. It’s a struggle, and I see you 💖
Same here, I've been self diagnosed with autism since middle school but its taken until after I became a legal adult and found a very sweet, neurodivergent counselor until someone started taking me seriously. I'm on the way to getting an official diagnosis now but just knowing what I have helped a lot for me. I stopped forcing myself to tolerate sensory stuff that would cause me to shut down later, and just having my close friends acknowledge it and support me helped a lot.
I self diagnosed myself with Interstitial cystitis or painful bladder syndrome and was lucky enough to have a doctor that truly listened to me. And, yes, I was right
Me too, I diagnosed myself about 3 years before I was officially diagnosed. It really was the only thing that made sense. I hope that you are feeling okay and have found some relief from this awful condition.
@@toykeyper8914 I’m blessed with an amazing primary doctor. All the urologists I’ve seen have been awful!! The one that diagnosed me in 2008 after the most excruciating cystoscopy was like, “well, looks like you’ve got interstitial cystitis, not much we can do. There’s a few treatments but they don’t always work 🤷♀️” Two others immediately told me I wouldn’t get pain meds. Neither time did I ask for pain meds.
Also having a diagnosis doesn't always mean anything.
I have been diagnosed of HSD and several mental illnesses but a doctor was still surprised when I considered myself "not healthy". In addition she basically discounted entirely my mental illnesses because I was feeling then a bit better.
Because my disabilities aren't considered officially disabled enough I am not officially disabled. It took me quite a lot of time to actually realise that that doesn't really matter and that I am disabled.
I don't have a Stutter, but looking into it helped me understand what was happening when I do stutter. (I have general anxiety disorder, so more prone to getting stressed, sometimes I Stutter more frequently than I hear other people do). Finding out that what I was doing was studdering helped me manage it and broke the stuttering loop of "stutter stress about stuttering, stutter worse"
I have a similar problem, do you know where I can find more information?
My EDS has made everything very difficult for me. I had to self diagnose to be taken seriously.
It's such a shame but know you are not alone, I can relate to that too 😕❤️
@@jessicaoutofthecloset I cannot thank you enough for your videos! You helped my son find a tentative self-diagnosis (hEDS), which then helped me find the right kind of specialist for him. After nine years ( = half his life) of frustration with the less functional side of public healthcare in Finland (15 minute appointments, always with a new GP) we paid a private physiatrist through the nose in 2018 and hey presto: hEDS it was!
The dx opened up the doors to public physiotherapy (free), a made-to-measure active wheelchair (free) and all the other free and low cost services. You helped us change his life to so much better. ❤️ (heart)
If you want to listen to a now much happier trans man tell his disability story, his latest video is about exactly that. His channel name is Oakwyrm.
Much love to your whole family from the bottom of my queer heart!
❤️🧡💛💚💙💜🤎🖤
(rainbow hearts)
I have never heard EDS being offered as a diagnosis everybody I know who has it ( including me ) came to the doctors basically asking for affirmation of diagnosis . I myself was not diagnosed despite seeing rheumatologist for most of my adult life until Jessica put up a video about her diagnosis and I saw how similar the descriptions were to what was happening with me... I just started a pregnancy at the time and it was going downhills fast and nobody was taking me seriously... Jessica's video with the information allowed me to self diagnose and find the specialist before I got into a coma we were able to save my life thanks to that video and I was able for the first time in my life to get care which actually improved my condition. I owe Jessica my life
I'm in a similar situation. I think I have EDS as well as POTS. Wait times and prices are hard, so I'm treating myself as if I do have these conditions.
@@bestaqua23 I did once read a comment by someone who got diagnosed because they started telling their doctor about the extremes their joints could go to without realizing they were extremes, and the doctor then asked about other stuff that seemed random but helped him diagnose them.
I have 2 mental health conditions ASD and OCD, my ASD started without self-diagnosis and my OCD started with self-diagnosis.
I live in Denmark and in my experience doctors and medical professionals are borderline resentful of patients who self-diagnose. My autism diagnosis took 3 appointments with a psychiatrist where all I had to do was fill out some questionnaires and have a conversation. My OCD diagnosis took 3 years of speaking to 4 separate psychiatrists who actively said that they didn't care what I thought my problem was. Two of them actively told me that I would never get an OCD diagnosis from them as I wasn't a doctor and didn't know enough about the condition to ever diagnose someone.
My advice: If you self-diagnose don't tell medical professionals when it's time for a formal diagnosis, just describe the symptoms, things will go much smoother xD
I'm American. So six months to be told to just calm down has stopped me from wanting to ever see a doctor. Self diagnosis works for me despite the fact I can't get medication, but I'll never get a chance to see and convince a doctor anyways. I love your channel. I do my best to fix things on my own since I can't be listened to.
Edit to add: I have been diagnosed with some ailments I don't agree with and feel like I wasn't listened to properly. Therefore my current self diagnosed feels better to me. Because it is mental (I have a pulse thing like you said! funny) I can more easily just be happy with some support online via various channels. I change what I can to help myself since my country won't do it for me.
I love your voice it always makes hard topics easier.
I’m so sorry that you don’t have a doctor that listens to you. ❤️
@@jennifers5560 Thank you, I appreciate your channel so much even though I don't comment a lot.
@@godslittlestidiot2984 I’m sorry I think you are mistaking me for Jessica. I am a fan of hers just like you. 🙂
@@jennifers5560 Oh I am woops! Well I bet you're great too
@@godslittlestidiot2984 ok that just totally brightened my day! Thanks! 👍🏼
I've experienced both pros and cons!
Pro: I've always been a shy nervous type and that's inhibited certain scenarios for me but I'm not particularly interested in jumping through the hoops to see if I can get diagnosed with "Generalized Anxiety Disorder" or something whereabouts. I'm content now in my adult life to just talk with my therapist about how being a highly anxious person impacts areas of my life.
Con: In high school I started experiencing serious physical symptoms like low appetite, dizziness and faintness, exhaustion, and eventually visible bleeding. My super intelligent self consulted Dr. Internet, brushed off the more serious conditions (because no of course it's not that!), and just chalked it up to stressed that would surely go away once I got through the notoriously hardest year of school. That ended with my mom taking me in for a checkup because she was concerned about me being pale and tired, which then escalated to the doctor telling her to take me directly from that office to the ER at the university hospital an hour away and that they would be expecting me. Fast forward a hospital stay, several specialist physicians, and a week later I've got a life long autoimmune disorder. Oops guess it wasn't just stress.
Do you mind me asking what it was? I feel that I have had some similar symptoms but haven't gotten any results
@@lydiastalcup1640 i was severely anemic from untreated crohns disease
I cannot thank you enough for making this video 💞 I've self-diagnosed with ADHD and BPD. My ADHD diagnosis was recently confirmed by my psychiatrist and I genuinely cried. It took me 5 years to be taken seriously enough by my mother to get me evaluated and then several psychiatrist to give me the evaluation without just dismissing me because I was self-diagnosing. My life changed completely after being treated for my ADHD, and now I have to navigate getting evaluated for BPD... which terrifies me.
Since it's a personality disorder, the number of professionals who are willing to consider that line of diagnosis is already small. So many are just convinced that no well adjusted kind person could ever have a personality disorder. Let alone Borderline. The Wikipedia list of people with BPD is short, but the vast majority of it are criminals-- if not serial killers. So few want to diagnose because this is how they view people with BPD.
From Australia. We now have a pretty good disability system. It is a paperwork nightmare to access but then it works. I am an uncontrolled epileptic who breaks lots of bones. The government gives me disability aids and $80 000 a year to employ carers 5 days a week and a chef twice a week to cook me meals. There is also emergency funding so if I break something I can have 7 day 24hr care. I have extra care at the moment because I have some cracked vertebrae. They give me a physio and OT and have made my house safe, clean the windows, do the gardening and even replaced my pillows when I bled all over them. Also of course I get my $420 a week disability allowance. Not too bad, all I have to do is wait to see what breaks next.
ndis is good if you can get on it but its hard to get on it if you dont have the right kind of disability
If you have several co morbid conditions that interact with each other the ndis doesn't give a shit. If you have been able to access the ndis you are one of the fortunate few. Also adult Neuro divergent diagnosis isn't covered by medicare, and that's if you can find a specialist to diagnose you. My psychiatrist has been trying for two years, and when we finally find someone, I'll be out 1.5K. I have fibro, widespread arthritis, adhd, degenerative disc disease and can barely move most days, and no ndis. Just because the system favours you doesn't mean it works for everyone.
@@angelawossname My psych stuff isn't in NDIS. I truly hope that they can get you a diagnosis so you can get help.
@@angelawossname Hi. It took me 7 months to get NDIS. I got onto NDIS because they supplied me with a private company to do the paperwork in their form which as you know one word in the wrong spot leads to refusal. All I can suggest is submit every page of hospital notes from every hospital with a very detailed account from your GP and ask your GP to contact NDIS to access a private company whose only job is to get you onto NDIS. That was my experience and twice they said my epilepsy and orthopedic injuries were't permenant. Yes uncontrolled epilepsy since 1986 to 2021 wasn't permanent and they are only just taking into account my very long term psych. My sister in law has similar problems to you. Neuro that they cant diagnose and psych. Her GP got her onto NDIS. She falls over and needs a chair because of neuro and the hospitals can't find out what it is. I really hope you can get the diagnosis and help you need because you really deserve it.
@@piarateking8094 It's a bitch. It took me 7 months. NDIS employed a private company whose job it is to get on NDIS. I was told my epilepsy and ortho injuries weren't permanent twice until the private company took over. They submitted every hospital and doctors record page by page and every record ended up to 425mm. Yolanda said to me nobody will read a single page but if your file is that thick you must be disabled. Get your doctor to write a very detailed account of your problems and call NDIS to get a private company to format everything in NDIS language. I hpe it works for you because when it does it's pretty good.
thank you for being so open about self-diagnosis! i recently got diagnosed with POTS after months of being self diagnosed, and only found my way to that condition because of your videos :)) im still self diagnosed with other disorders like autism and ADHD which i have been fighting to get evaluated for, but its extremely common for people to get pushed aside who got their self dx ideas from “social media”, when really if it weren’t for social media i would still be struggling with my POTS with zero treatment. its really important to listen to self dxed people and try to get us whatever treatment we need.
edit: also!! in the video you talk about anxiety being accidentally attributed to physical conditions, which i’ve definitely experienced. i was originally diagnosed with anxiety and a vitamin D deficiency when i tried to get diagnosed with anemia (what i thought was causing my POTS symptoms) and that held me back a lot from getting my POTS diagnosis, no one would take my heart-rate issues seriously and only understood once i took my heart-rate at home! please please please pay attention to your body, and look for ADDITIONAL symptoms you might not have noticed before.
As someone who until last week was undiagnosed, I was disabled then and am disabled now. I am very glad to see this!
My issue is EDS and dysautonomia, and it took me over five years from the worst of the symptoms to be diagnosed.
I think self diagnosis is valid BUT there should always be room left for error (a very understandable thing since doctors aren't even close to perfect in their own diagnostic process, a laymen can hardly be held to the same standards).
If I hadn't made accommodating myself a priority I probably wouldn't have made to to the diagnosed state. Self diagnosis gave me the self confidence to ask for the help I needed, use services I needed, and make my home accommodate ME instead of the other way round.
I've kind of self diagnose myself with autism, because despite being high functioning I still struggle. Between my anxiety treatment and being able to use coping mechanisms and be mindful of my limitations (I say I'm hard of hearing but I think it's more a sensory processing thing, for example)
Same! I was given a “tentative” diagnosis of auditory processing disorder by a hearing technician, because I technically have perfect hearing but struggle socially especially if I can’t lip read… I wish real life had subtitles! I also sometimes struggle to process sensations and have sensory overloads, in which I can become selectively non-verbal.
@@bec5006 oh my god I wish there were subtitles irl too! I've been saying that for months now lol. Glad to see I'm not alone
Could you try a speech to text app? Not quite irl subtitles, but at least a written version of what's being said!
@@helenm1085 between my possible ADHD and my Lazy that is actually just fatigue from POTS it’s just too much effort most of the time… I simply can’t be bothered 😂 it’s a very good idea for others though, especially if their difficulties are more substantial than mine
When 2 friends and I started Australia's first EDS foundation, quite a few years ago now, we set up a support network with an online discussion forum. There was an application form to join (for obvious reasons) and we decided right from the start that we would always approve applications from people who didn't yet have a formal diagnosis, but believed they may have EDS or a related disorder. Back then, it was estimated that 93% of people with EDS were not formally diagnosed and the average age of diagnosis was mid-30s. Things have improved since then, but it's still very difficult for most people to get their EDS formally diagnosed and a lot of adults only receive their EDS diagnosis when they have a child who's diagnosed.
I'm currently working on getting formally assessed for Autism and personally, I've never been more certain of anything than I am about being Autistic. Learning about Autism has enabled me to find a ton of things that help me navigate the NT world and to stop trying to force myself to "just be like everyone else", as was very much bullied into my as a child, by the adults around me. Autism self-diagnosis has been genuinely life-changing for me, even if I'm ultimately unable to access a professional diagnosis.
Thanks for making this video -- it's a complicated topic and I appreciate the validation and support for people in my position 💜
Short answer. Yes.
One thing i never see people talk about enough esp for mental conditions is that if they are genetic and your parents were never diagnosed, not only will your parents dismiss it as "normal because im like that" but doctors also look at your parental medical history when diagnosing you
I went to a psychiatrist at my university and he said that because no one in my family was diagnosed and my grades were good, he wasnt going to diagnose me with anything, even after explaining my family hadnt ever been tested for anything and I really thought my struggles and symptoms sounded like ADHD
I keep wanting to diagnose myself with something, anything, so I can justify the hard time I'm going through and the difficulties I have. I wish i were able to be forgiving of myself and tell myself "things are hard but you're doing your best" regardless of whether i have something "diagnosable" or not, but I can't. I don't feel like I have the right to be having a hard time, it must all be personal failure.
definitely was pretty sure I have endomitosis before my doctor (fourth one, after about 2-3 years) suggested it. I'm still sad I didn't say anything earlier, even just asked more questions. it's important to be actively involved in your medical treatment and to speak up when you fell something is wrong. sadly a lot of people still get dismissed and not taken seriously
With endometriosis especially I think it’s becoming a lot more wide spread known about and they are trying to educate people on it better now which is really good. My high school had someone come in ever year to talk to all the girls about endometriosis and make sure they know all about it. My friend was self diagnosed (because an official diagnosis requires surgery but her self diagnosis was backed by a doctor) with endometriosis at 12. I was pretty sure I had endometriosis at 13 because I heard my friend talking about it and because of the talks at school and also my mum had it so I heard about it from her too. I haven’t really talked to a doctor about it because it’s not a priority for me now but I have talked to a doctor about my period pains and am now on birth control to stop my periods so no more pains that leave me bed bound.
I had the most difficulty with my Tourette's diagnosis. I once told a GP that I think I had it, and he said "oh, so you swear then?" Was referred to various people who all either said that my tics were due to my ASD or my anxiety. I eventually got my diagnosis at 16 after 4 years of trying. Currently having a bit of a time with getting my OCD diagnosed haha
One of my friends didn't get their Tourette's diagnosed until they were almost 30 mostly because their tics don't include swearing (usually they hums or flaps their hands).
That's ridiculous, and I'm sorry u had to experience that. Literally our first class in med school on Tourettes said, "most ppl with Tourettes don't come in with the stereotypical swearing.
@@rjkbuny only 1 in 10! And you'd think a GP would know lol
My daughter's tics were brushed off when she was small (around 4) as have other things and we learned to live with them as they're on the less severe end most of the time. I'm hoping that she will gain more opportunities for diagnosis (if she chooses) as she gets into her young adult years and out of our rural town as it's something that has happened with so many of our friends kids. GPs can be such a nightmare when they immediately dismiss you.
of course neurodivergence is dismissed once again
I self-diagnosed with endometriosis due to chronic pelvic pain during my periods, and I was ignored by doctors for 12 years. I couldn't do much once I figured out what was going on with my body, since the only interventions are surgical or prescription drugs, but it was very reassuring when I was finally diagnosed by a medical professional! We know our bodies better than doctors sometimes!
Thanks for sharing this :)
I keep wondering if I have endometriosis but no one is interested as I'm not in 'enough pain' but they happily give me mefenamic acid to manage it. Ignoring the 7 years of infertility (all tests came back clear) and multitude of other symptoms. I just don't have the energy anymore to keep pushing. I'm so glad you got your diagnosis though. I hope it has helped in some way to manage everything.xx
Intersex here! I was self diagnosed for nearly 10 years because health insurance wouldn't approve the tests needed to confirm the diagnosis. I finally got diagnosed this year. So yes, self diagnosis is vaild. Sometimes it is your only option to explain your symptoms.
One of my disabilities is dysphagia (swallowing disorder). I first diagnosed this myself. I didn't have a label for it until I watched an old episode of Law and Order: Criminal Intent. A detective concluded someone couldn't be guilty of the crime because of his dysphagia. But I have since had this validated by physicians. We start somewhere.
Another reason why it's good to mention a self-diagnoses is often a given doctor will assume something has already been tested/ruled out by a prior doctor before you got to them. A patient who has never been checked for or thought about condition X will appear in conversations identically to someone who has previously been told "It's can't be X" because we never remember all the hundreds of illnesses that have been discounted. Therefore, mentioning a self-diagnoses can cut the silent spiral and let a doctor know "oh, that should be ruled out at least".
For instance, I wasn't diagnosed as Autistic until I was 26, and I think part of that was due to having other health conditions that required seeing doctors frequently throughout my life. Therefore, every new doctor who sees my history just assumed one of them before had checked for ASD and discounted it. Had I been more confident to self-diagnosed and ask strongly to be checked specifically for ASD, perhaps I would have been diagnosed earlier. Edit: I want to add that the only reason I did end up getting diagnosed is because a psychologist said to me "I'm potentially wondering about you being neurodivergent, have you ever been assessed for ASD?" and I told them that I had mentioned it once but it wasn't looked into so I didn't bring it up again. She then referred me and within a few months I was officially diagnosed. Had she not checked whether it had been ruled out before, I may never have been diagnosed.
I self-diagnosed myself with an anxiety disorder when I was a teenager, and it was helpful for me to be able to put a name to what I experienced, but I thought it was pretty moderate so I didn’t feel the urge to seek out a proper diagnosis. I finally went to get a diagnosis earlier this year. It was a huge wake up call to me I said I’d been having a lot of panic attacks lately and the nurse practitioner assumed that a lot of panic attacks was 2 a month. I had to tell to her it was more like 3 a day. Turns out I had much more severe anxiety than I thought I did, and I had thought I was weak for not being able to deal with it on my own, while the nurse practitioner couldn’t believe how long I had gone undiagnosed with such a severe symptoms. I am now on medication and haven’t had a panic attack in almost 2 months. My medical diagnoses completely saved my life.
I've been on a journey with self-diagnosis and my mental health, especially my BPD. I used to really hate and refuse to do self-diagnose, but I think it's been really helpful to me once I got comfortable with it. It allowed me to find a community on Reddit when I felt so alone before, especially because BPD is such a misunderstood and vilified illness, and it also allowed me to be able to explain my symptoms to doctors when I finally got to them after long waiting lists.
And it turns out that I was right, not only with BPD but also clinical depression. So, yay I was right! But also "oh god I was right ._."
Hope everyone has a lovely day :)
What an appropriate video for me to leave a thank you comment! I've been struggling with repetitive injuries and poor health for my whole life (including but not limited to tonsillitis for 9 years, periodontal issues, auto immune diseases and placental abruption), and it wasn't until I saw your video explaining that floppy joints is a diagnosable symptom, that I've finally managed to crack the case with the help of my doctors. After a lifetime of being told I was just lazy it turns out I have vascular EDS and POTS and I never would have got there if it wasn't for you sharing your own story, in such an elegant and informative way. I promised myself that if it turned out this was my diagnosis, that I would take my friend out for dinner who shared the video to me, and I'll join your members subscription and thank you. So from the bottom of my heart (and globe as I'm based in NZ), thank you. You've changed my life
I guess I needed this video, hahaha. I've been struggling with the question if I may have ADHD for almost 4-5 years now, but I've never been taken seriously. Did a lot of research already- as a part of my studies but also out of personal interest. Everything I read about ADHD is so relatable, but I've reached the point I'm almost ashamed of talking about my struggles. I keep telling myself I'm overreacting and exxaggerating my struggles, that I should try harder, that I talked myself into these issues, but I know with my whole heart I'm not. And it's frustrating and exhausting.
So thank you for talking about this!
Since I diagnosed myself with autism and ADHD I feel much better. I don't have access to therapy but it gave me confidence to stim in public and be upfront about my memory loss. On the other hand, only a doctor's diagnosis of hypermobility and balance issues made me sit on public transport. Before that I knew there's something wrong but I thought I'm just weak.
And even when you go to a specialist they might misdiagnose you. I was so gaslit by a psychologist that worked with autistic people that it made my mental health even worse, had to go to another professional to be heard and she said it would be very important for me to get evaluated. Turns out I am indeed autistic, and that woman was totally wrong, she shouldn't be practicing at all with all the things she said to me. If you are sure you're misdiagnosed and have the resources please please please go to another specialist, if you can get recommendations from other people that have the same thing you suspect you have it's even better!!
Regular check ups also include eye exams even if you don't wear any vision correction. I had an optometrist pick up on my high cholesterol years before it showed up on a blood screen.
This is by far the best definition of disability I have seen. I had to rewind and listen to it again.
Excellent vid as always cheers Jessica! And thanks for mentioning that anxiety could be a misdiagnosis for a neurological problem and that often no one tells you that you're disabled you sometimes just have to work it out and it can be extremely hard to accept and have accepted if you look young and well.
"That's no large corporation has commercialized it yet." It's funny because it's true. And this disabled person thanks you for doing your part in bringing awareness to it. This whole video is brilliant.
Jessica, your EDS video helped me continue seeking care even when doctors told me there was no “point” in getting it diagnosed because all I could get was physical therapy. Turns out there’s much more wrong here (craniocervical instability, Chiari, MCAS, ADHD, PTSD) and getting these diagnoses literally saved my life… letting me get more help, better accommodations, getting my service dog! And knowing what to avoid… any roller coaster could be a roller coaster of death for me 😵💫 when you have something people haven’t heard of, self-diagnosis is one of the only ways to get the right diagnosis! After knowing in my gut that EDS seemed right, I was able to find doctors with experience in treating, and my life has gotten exponentially better. Thank you for making these videos, putting so much into words that I wish everyone could know!
I never heard of dyscalculia until I found it on my own in my 30s. Once I did, I was floored and it answered all the years of torment I had with numbers and math. No one has ever formally diagnosed me with it, but it checked boxes I didn't even know existed.
I needed this today. Between pandemic and other things, I wasn't able to keep going with pursuing a diagnosis... while I still want one, and need to see a doc about other issues (that may or may not be connected to my self-diagnoses?), I feel better about having taken my health and life into my own hands instead of waiting to become so ill/in pain that doctors stopped ignoring me. Thank you for pointing out both benefits and pitfalls, it encourages me to try again, explaining how the steps I have been taking on my own do and don't work.
I have self-diagnosed as autistic. When I called my GP to ask if I could be referred, they said ‘if you were autistic, your school would have noticed’. I didn’t want to go to my school because my neurodivergent friends have had bad experiences with them: my friend with ADHD was told to ‘buy a planner’ rather than being referred to the nhs, and my friend with autism was told ‘you can’t be autistic, your teachers say you’re nice and well-spoken’. I’m going to uni this year so I’m hoping I’ll be able to get a diagnosis there. It just seems that, especially for AFAB people, neurodivergency is ignored. I can’t fathom how I was missed: when I was little, I was known for my “anger issues”, being weird, having niche interests, being really good in school but misbehaving, and more. I can’t use vacuum cleaners, hand dryers or hair dryers because of the noise. But no, I’m sure I’m just lazy, angry and weird (/s).
For autism especially, self diagnosis is frowned upon. But for queer, afab and/or POC it’s so much harder to get a diagnosis because people have an idea of autistic people as white angry little boys who like transformers with destructive stims, or as Sheldon Cooper.
As well as this, my mother had lupus, and she wasn’t diagnosed for decades. She was on 5x the normal dose of antihistamines for all of her lupus-related problems, especially iritis and hives. She didn’t get a diagnosis until she was hospitalised for kidney failure.
Forgive me for respecting self-diagnosis. Doctors are great on the whole, but the system around them is not.
For a very long time I struggled with the fact that I did not have a diagnosis for my autism. I always wondered why I was the way I was, and spent so much time trying to push myself to not act a certain way and mask my true self. After a long time of consideration, I went to my mom to tell her that I thought I was autistic. (I was in my early 20s by this time) The first thing she told me is that she always knew that i had something, but never wanted to take me to a doctor for a diagnosis. This was a real blow to me- considering all of the things I could have been working on to take care of myself better, or cope with situations in a healthy manner if I just *knew*. She told me that she didn’t want me to be alienated by others, and I think not knowing had the same effect, regardless. I had to learn about my autistic traits and behaviors by talking to other people who were autistic and bonding over specific shared experiences, which were some of the most liberating and amazing conversations I have ever had in my life. If I didn’t self diagnose myself when I did, I don’t know I would be here today. If you feel like you aren’t being listened to, or that you don’t have access to information or care that you need- that you don’t have to feel ashamed to draw those conclusions yourself.
I appreciate the community so much for this perspective. I'm a mentally ill person, but have no idea what's wrong with me still after years of going to drs, being misdiagnosed and put on meds that actively harmed me. I have too much medical trauma to get myself back into therapy rn, and have been trying to self diagnose my problems. It makes me feel bad, like an anti-science person who thinks they know better than drs or something. It's nice to know others wouldn't see me that way. Love y'all
Sometimes realising what something is likely to be is half the battle in terms of anxiety. I kept wondering what a variety of issues I've had for as long as I can remember and it took me a year of looking into the autism spectrum (thank you for your video on it) before I went to my GP who just took one look at my research and within about 10 minutes said 'oh, yes, you probably are, so i'll refer you'. It makes a difference to know your research.
Happy Disability Pride Month to all disabled folks, officially diagnosed or not! ✨
I figured out I had CRPS 3 years before a doctor did. Actually, it wasn’t me who figured it out, but a bunch of people on a chronic pain forum. It was a total relief to get a real diagnosis.
I knew I had depression almost a full ten years before finally getting diagnosed with it. I was pretty young when I realised and sadly wasn't taken seriously by doctors, and went through a lot to find finally a good therapist who diagnosed me and put me on a treatment. I can actually function somewhat normally now! Amazing! Now onto tackling other stuff in my life!
As someone who did not find out until well into my adulthood and a full emotional breakdown of being a failure for a parent to tell me that in Kindergarten my teachers wanted me assest from ADHD, and Austism. My parent never did because she was like she's four of course she's hyperactive and has poor impulse control. Yeah turns out that ADHD is absolutely accurate I do have sensory processing issues. I am self diagnosed because my area does not have the greatest mental health access. I have learned a lot of good skills to help with my sleep issues related as well as hyperactive energy. I still have issues with impulse control, anxiety and depression plus medical trauma. I was ill much of my childhood and even making a doctors appointment is terrifying to me.
I have a similar experience, and so does my brother. That sucks, and I see you 💖
@@bec5006 Thanks I have found so much support with the community and just knowing other people out there do some of the same things as me.
i'm a nearly 24 year-old autistic woman, and honestly have little hope in ever receiving a formal diagnosis due to the insane ableism and inaccessibility around the diagnosis process. i'm also an immigrant in the UK which makes it even more difficult
I can't begin to thank this channel and the commenters enough for always making people feel included. I had a liver transplant at 9 months old so I have always been a "sick person". I got diagnosed with stage 4 endo a couple years ago and then IBS. It really sent me spiralling because I'd always assumed that all of my issues came down to the transplant. Now, with what I've learned from people like Jessica, I can advocate better for myself and I'm in the process of getting a diagnosis for my other issues. Keep up the amazing videos, thank you ❤
I really needed this video today. I've been stuck in bed until noon crying because I've been having a really hard time and I don't feel like I can talk to my loved ones because when I do, I just feel like I'm being a nuisance. But watching this has helped me feel a lot less alone.
Barriers to diagnosis can be related to body size as well! Fat patients are often told that weight loss is the solution to whatever issue we present with, so our actual physical ailments go undiagnosed.
Also, your videos helped me figure out that I have Hypermobility Spectrum Disorder! Thankfully my doctor took my self diagnosis seriously and it's officially on my medical records.
I think I have ADHD and currently I'm struggling to get that diagnosis from a medical professional. It just makes sense! My psychologist says I have the symptoms but she prefers not to diagnose a disorder if it isn't incapacitating at a "certain level" even though she knows I struggle with my social life and routines heavily! And the family doctor I went to says I have anxiety but would you be surprise if I tell you that anxiety is common in people with adhd?? ESPECIALLY FEMALES (hi, I'm a woman) at least he has forwarded me to a metal health professional... In a non defined date. But still that's a step forward.
It is very influential in everyday life indeed :/ wierd of them to say they can't diagnose that but ig better then saying you don't have anything. Hope you get checked out as soon as possible. I also have undiagnosed ADHD (also as a woman) and don't think I'll get officially diagnosed any time soon due to financial struggles. Its a long way :'D
I went to a psychologist for severe anxiety, moderate depression and difficulties with focusing (amongst other issues). She was willing to give me the GAD diagnosis but she said I was only sub clinical ADHD because I was too organized (when I had told her I need things to be organized or else my brain gets very scattered). I find my thought process exhausting and counter productive but because I’ve managed to mask some of the symptoms, it’s not bad enough.
@@courtneyfurtado-crannie3459 ugh that sounds exhausting. Hope you can manage to get diagnosed properly by someone else
Can you ask to just try meds for a month? The thing about "to a certain level" is you don't know what other levels are possible. When I first started meds I went to my first check-in appointment like "Wow, it's like I never knew I was living under a layer of mud while everyone else was getting to live on dry land. I didn't know everything wasn't supposed to take so much energy!" My psychiatrist was like "Yup, that confirms the diagnosis."
@@mariemulqueen6587 I don't know, maybe after the appointment with the metal health professional I can do that. But the other doctor that said I had anxiety said ADHD doesn't have a solution for adults so I don't know if they are going to prescribe meds even if the diagnosis is positive
Self-diagnosis was an important part of my life. Growing Up, I always recognized that I was different, but didn't really have the words for it. Eventually I was diagnosed with ADHD and that explained a bit, but after a while I wanted to do some research into autism. I came to that same haunting yet comforting feeling that a lot of self-diagnosed people get when they realize "oh crap, that me." It would take four more years for me to learn that I HAD, in fact, been diagnosed with autism (aspergers) at the same time as my ADHD diagnosis, but it had been hidden from me and I had never been given the proper treatment I needed. Even after I found out by sneaking a look at my medical papers, it still took me a couple years before I knew that I could take steps to improve my life with autism and not feel guilty for how I felt about certain things.
Fast forward a couple months and I think I've been experiencing heart problems. My heartrate would suddenly and unexpectedly spike at unpredictable times, and I would be left fatigued and drowsy. We went through the whole rigamarole with the medical system and I had to ear a heart monitor. While I was wearing the monitor, and was briefly excused from P E class activities, I described what had been happening to one of the special needs assistants in that class. She said that it sounded like panic attacks. I said that there's no way it was that because I wasn't stressed at the times my heartrate jumped. She then explained what it seemed like not a single one of the heart doctors knew, the fact that you don't have to be actively stressed for a panic attack to occur. So sure enough, I looked it up and yep, due to the depression I was experiencing at the time, I had developed symptoms of Panic Attack Disorder. Had that not happened I'm not sure I'd've managed to admit that I was under a lot of pressure and started to put my life into place.
Self-diagnosis is often the most important step in dealing with your symptoms, whether they be permanent or temporary. It's important to know when something is off, even if you aren't certain of what exactly it is.
Yes to everything you are spot on. Even something as simple as an ingrown toenail I had to beg for help. After trying to take care of it myself for a year I made an appointment to see a doctor. I couldn’t wear shoes or stand for a long period of time I was in so much pain. His response was go get a pedicure. After 3 more years I went back to another doctor and was told “oh it looks like it’s healing it should be fine.” 6 more years & 2 more appointments I was still suffering with extreme pain in my foot and not being able to do the things I wanted to do. One day at work I accidentally dropped some thing and hit my toe and I could no longer take care of it myself I needed help I called and they told me I couldn’t have an appointment for weeks. I was in extreme pain so my husband called the same doctor and said “hi my wife has hurt her toe and she’s been dealing with an ingrown toenail for years can I make her an appointment.” They responded bring her in tomorrow and we can do surgery. So after 10 years of constant pain and begging for help I finally received the help that I needed. Simply because I had a man call for me.
Yeah, I live in a country where ADHD is still largely considered something that only children have, even by doctors, and as an adult, I had to do a small self-diagnosis journey first to even dare to ask a doctor about it.
'self-diagnosis is prone to error' so is professional diagnosis though 😂 especially if you're part of a marginalized group
I'm sure you'll mention this later in the video though
Yeah, she literally said... if you're female.... or your skin color doesn't match that of the doctor. So being in part of the population group that makes up slightly more than 50% of the population is still "marginalized"
also some issues are just not well known
OMG I love you! Thank you for sharing this!!!
Thank you Jessica for this.