The pros and cons of self diagnosis... 

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"Adults tend to stop listening to children who say they're in pain continually" is my entire life lmao

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!

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.

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.

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.

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. 💜

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.

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!

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.

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.

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.

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.

"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.

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.

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.

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.

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

Happy pride month. I have several chronic illnesses including CFS/ME and people get so chapped when I refer to myself as “disabled”.

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.

If you're reading this and are disabled either physically or mentally/psychologically... just wanna say have a good day! Keep on keeping on.

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.

As an afab person with autism, adhd, and an S rank in masking I well recognize the importance of self diagnosis.

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.

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.

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.

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…

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.

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.

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. 💜

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.

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 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.

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.

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.

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.

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

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!

Short answer. Yes.

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 found that it works well when you tell a doctor "I am experiencing symptoms that line up with X (disease, disorder, illness)".

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.

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)

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!

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!!

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.

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.

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.

My EDS has made everything very difficult for me. I had to self diagnose to be taken seriously.

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

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!

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.

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 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

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.

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!!

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 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.

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.

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.

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.

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)

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.

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'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.

Happy Disability Pride Month to all disabled folks, officially diagnosed or not! ✨

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 💜

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

This is by far the best definition of disability I have seen. I had to rewind and listen to it again.

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.

getting a diagnosis can also be so steeped in privilege and your access to healthcare professionals and also honestly.. luck in terms of the doctors you see.

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.

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.

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.

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 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 :)

'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

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.

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.

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 :)

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

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.

"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.

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 ❤

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 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!

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.

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.

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

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.

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.

As an afab with autism, self diagnosis was hugely important to me. Most doctors see someone who looks like a woman and say they have about anything else. I was diagnosed with bipolar, depression and anxiety before I got my autism diagnosis, even when I repeatedly told doctors that none of those made sense for me. I was even told by a psychiatrist that I couldn't have autism because 'I was able to talk about my emotions'

Thank you Jessica for this.

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.

Clinical Psychologist here unfortunately it can be very dangerous for people to self diagnose mental health conditions. There's a reason that we undergo such training and practice. I would caution anyone before diagnosing oneself. Maybe educate yourself and bring your thoughts and concerns to a clinician. Hopefully you match with someone who will listen to you and appreciate your research. Don't assume because its psychological that its easier to self diagnose.

That face she makes where she rolls her eyes up to a corner going “hmm how do I say this nicely so I don’t offend the people being offensive” 10/10 makes my day everytime ❤️

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.