The dangers of self diagnosing? Mental Health & the Internet | Khadija Mbowe

As a professionally diagnosed autistic dude, I feel like a lot of the time, people just treat accusations of self-diagnosis as a socially acceptable way to bully autistic people who they consider "cringe." It seriously bothers me. I also don't get why people are so paranoid about "self-diagnosers" in the first place. Like, if somebody feels at home in autistic communities and it helps them feel less alone, then I really couldn't give less of a shit whether they have a paper that shows if they're autistic or not. People should really stop blaming random teenagers on the internet who just want to find somewhere they belong, and they should start blaming our god-awful medical systems that're making pursuing an official diagnosis such a massive headache in the first place.

As a former therapist, my issue with the obsession with self-diagnosis is that we begin to pathologize EVERYTHING. Like, it's okay to just have a personality. You might just have quirks and preferences; it's really most likely not a disorder (unless it interferes with your ability to function). And I think the danger of this is it helps crystalize an individual model of disability and takes us further from a social model of disability, ie something is wrong with you vs. we as a society should accept and accommodate a wide variety of needs and presentations.

Thank you for bringing up the specific stigmas against personality disorders and more severe ones!! I feel like there is still so much stigma against people with schizophrenia, bpd, apd, etc. Destigmatizing mental health issues means destigmatizing ALL mental health issues, not just anxiety and depression

Sometimes a misdiagnosis from medical professionals can be more harmful than a self diagnosis. I was diagnosed with schizophrenia even though I don’t have auditory or visual hallucinations. My bipolar medication caused me to lose my inner monologue. This happened while being on scheduled injections I was asked to leave a coffee shop (the hospital was called) for reading a book out loud because I couldn’t read otherwise. The doctors believed I was speaking to imaginary people, when in fact, losing the inner monologue was a side affect of the medication was taking.

At the point I'm video about trust I'm healthcare system: my brother-in-law went to his GP seeking an autism assessment, so with the interest of official assessment and was refused because his GP said 'you have a girlfriend? No, you can't be autistic'. WILD.

I'll just put this out there about self-diagnosis: I've been in therapy for like half my life, due to debilitating perfectionism and issues with focus. When I first learned about ADD/ADHD in high school (~2008) I could have sworn I had it. No therapist ever suggested it, though - in fact none of my therapists ever diagnosed me with anything. When I started seeing my most recent therapist at age 30, I brought up pretty much every session that I thought I had ADHD. By now, I'd been diagnosed with depression by a doctor and was on Wellbutrin since it's prescribed off-label for ADHD, and it helped for sure. One day, my therapist asked me, "have you ever looked into OCD?" And I was like 😐 I never had, because I don't fit the OCD stereotype. I'm not germaphobic, I don't touch light switches 3 times, etc. So I was pretty confused how my therapist came up with this one. I went home and Googled OCD and learned a lot more about it... And started to agree with my therapist that I had it. We "made it official" lol, and I started doing OCD therapy, and IT CHANGED MY LIFE. Finally, after 10+ years of therapy, we were actually getting to the core of my issues!! My therapist said I may still have ADHD, or maybe a subclinical level of it. But the thing is, I'd already built so much support in my life for my ADHD side that I didn't really feel like I needed to go down that road any further. The OCD treatment is what made the difference in getting me all the way "better." So yeah, on the one hand - good treatment starts with good diagnosis. If you don't know what the issue is, you can't treat it properly. On the other hand - if tips & tricks for people with a certain diagnosis help you, then feel free to do those things, with or without a diagnosis of your own.

i self-diagnosed myself as autistic for 5 years before i saved up enough to get a private diagnosis with someone who yook me seriously. in those 5 years i was told that it was pointless to get an adult diagnosis, that i was allegedly taking all the medications that could help me anyway, and that i'd missed the cutoff for behavioral interventions as a kid. the medications were actually not helping me, though. and diagnosis actually helped me understand a lot of things i couldn't understand before, as well as giving me the validation and alleviating a lot (not all) of my imposter syndrome. i'm now fighting to be taken seriously about physical issues i'm having and just getting the run around. the fact that people see all of us "self-diagnosing" and get mad at us for it and not the US medical system for being expensive and inaccessible blows my mind constantly.

The thing is, is that you can't tell when someone is self-diagnosing after a single tiktok and when they're self-diagnosing over years of reading up and listening to the experiences of others. And while professionals are more qualified to diagnose people, they still have biases that skew their assessments. Editing to say: If someone can’t self diagnose off from one video, you can’t tell if they’re faking it or not off from one video. People who self diagnose aren’t necessarily looking for a specific thing, they’re just looking for answers. And as I’ve stated in a comment below: when I say biases, I mean shit like racism and misogyny. Things that are very well documented in the medical field. Why would they suddenly not be a problem in the mental field?? Those types of biases mean that professionals do not in fact have an outside view of things and it often leads to misdiagnosing, which can and does lead to treatments that make things worse.

as someone getting their phd in psychology and will be a psychologist able to diagnose people with mental disorders, I personally do not have an issue with self-diagnosis. as a black woman, I understand the barriers that arise with trying to get access to mental health care and a diagnosis. diagnosis can be affirming for people because they are able to put a name to the symptoms they feel they are experiencing. HOWEVER, I think nothing can replace receiving a diagnosis from someone who is an expert and qualified to do so. you can feel very strongly about having a certain diagnosis and you may be correct, but you can also be incorrect. having an incorrect diagnosis can DELAY getting the proper treatment needed because that's the primary function of a diagnosis--- to inform treatment options. I see the utility of a self-diagnosis, but it's not a replacement and I will strongly encourage everyone to seek a professional if they are in the position to do so. edit to add: i forgot to mention that practitioner biases are a major contributor to misdiagnosis/underdiagnosis. there is a lot of research supporting this! the mental health field/psychology is a growing science. myself and my fellow colleagues are actively working toward inclusive and culturally responsive practices! we need more professionals of color, neurodivergent professionals, etc.

Hello, autistic woman here! I wanted to give my 2 cents about self diagnosis as it relates to autism and talk a bit about my own experience. Getting an autism diagnosis is notoriously difficult for women and people of color. Because most studies related to autism focused on young white boys, the symptoms of everyone else who is not in that category can have their symptoms brushed off as just being "eccentric". For women specifically, traits specific to our gender can bar us from diagnosis and I experienced this first hand. When I was a kid I actually went through the autism diagnosis process, and while I checked off a lot of boxes it was ultimately decided I wasn't "autistic enough" because I liked to talk to others. This is very common for women as we're often socialized to be hyper aware of social situations and are judged more harshly for our mannerisms compared to males, hence leading to us learning to blend in better (this is known as masking). As an adult I went through the process again to get accommodations and it was very draining. First I had to take a survey with weird questions like "would you rather go see a play or go to the library" and "have you ever killed small animals". With questions like that first one, it felt very infantilizing because I could tell the question was trying to gage my socialness and limits to stimulation, but asked about in a very roundabout way. I'm a musical theatre kid, I love plays! But that doesn't mean I don't also need my quiet time and that loud environments or weird textures can't also be very distressing to me sometimes. I love seeing plays AND going to the library, but they're not the same. But if you want to get a diagnosis, there IS a right answer. After that was done, I was given a form to be filled out with the more direct questions by my mom, still not allowed to give any input. Since autism usually needs to be diagnosed in childhood they needed input from someone who raised me. While I understood this, it still felt humiliating that I wasn't asked some of those questions. After ALL that, I was FINALLY given the chance to discuss my experience and had to drive to a facility an hour away to finish my testing. THIS is what it takes to get diagnosed. And you have to fight for yourself and advocate for yourself the whole way through. Getting a diagnosis takes time and money (and in my case, a connection to someone who raised me) which are all huge privileges that not everybody has. On the topic of "making autism your personality", I want to note that when you know you've been different your whole life, but told by the medical system and society that it's all just in your head, it can be a very jarring experience. My whole life, I knew I was different. There was some strange quality about me that made me stick out from everyone around me, and it felt like everybody knew what that was except me. It's a very isolating experience. Autism affects everything in my life and how I see and experience the world in a very deep and profound way. To finally have that answer, to finally have that knowledge of WHY you were different and to find that community of people who share this experience that you thought was totally unique to you is so freeing. It isn't my "whole personality" but it affects so much of my daily life. I am a woman, an artist, a student, an engineer, a film fanatic, a musician, and I am also autistic. Do people misdiagnose themselves? Sure. Do people sometimes lie for attention? I mean I guess, but I would be willing to bet if someone wants to lie about being autistic for attention that they have some other issues going on. But a lot of people self diagnosis because the system has failed them. And a lot of the time, they are right. I don't want to scare anyone away from getting a formal diagnosis. Getting accommodations and help has changed my life for the better. But if you don't have the means to get a diagnosis in this moment, that's also ok. The mental health community has its problems, but it has also helped so many people and made others feel less alone. I visualize internet resources as a band aid until people can get the professional help that they really need. In the past 10 years, so much progress has been made to destigmatize mental health, but there's still so much change that needs to happen in the system. I hope it only gets better. If you've read this far, I hope you have a fantastic day and are taking care of yourselves <3 edit: wow it's only been a couple days and when I saw how many replies I got I was so scared that a comment war or something broke out but I'm so delighted to see so many people saying they relate to my comment. It honestly makes me somewhat emotional to see so many people talking about and relating their experiences 🥹 It's overwhelming in the best way possible. Thank you to everyone in this reply section who has shared their experiences, truly.

Im black & have a highly stigmatized disorder and I was dxed young. Ppl think dx is the goal but it’s a double edged sword. Some HCW & even MHP biases are so strong, it actively prevents you from getting *any care* . And I mean once they read your chart, it’s like a switch flips. Some doctors will blame any problem you have on MH. They just stop thinking & refuse to treat you bc they think it’s psychosomatic. Some HCWs/MHPs will treat you like a demon or a wild animal, barking orders or talking to you like you can’t understand them. I now don’t put any MH dx on medical records. It’s a lot easier to get healthcare when HCWs just think you’re a bit weird.

As someone, who has been to therapy for years, I like how you delved into how ppl use "therapy speak" and how it can be misconstrued over time. "Therapy speak" is being used by ppl who have never been to therapy or group sessions and learn it from the internet especially TikTok like... And loving your fit and braids giving Storm from X-Men vibes. 🌩💖

A lot of my actual medical diagnoses, both physical and mental health, were only diagnosed by a health professional BECAUSE I self diagnosed it myself first. After doing tons of self research on my symptoms and attempting to figure out root causes. Only then did I bring up my thoughts and findings to my doctors. It’s often takes years for an official diagnosis for even physical conditions. Self diagnosis is a helpful tool to help steer medical professionals in the right direction. After all no one knows your body and mind better than yourself. Doctors should be more willing to listen to our thoughts and concerns.

The lack of healthcare is so real. I got diagnosed with adhd at 18 and still invalidate myself or feel invalidated over it, especially being afab and trying to mask my symptoms. I only got diagnosed after a second suicide attempt had me in a residential mental health program where I met with a psychiatrist and therapist every week. When I was 16 or 17, I noticed that I had a lot of similar symptoms to my friends with adhd and people talking about the symptoms online and I brought up to my mom that I was interested in seeing if I had adhd. She was very convinced that I did not and didn’t even hear me out, comparing me to her brother who had more stereotypical symptoms. Later, I had a therapist say that I should get a diagnosis because she was pretty sure I had it. When I brought it up to the psychiatrist with my mom, he said I probably didn’t have and and even if I did, he wouldn’t give me adhd medication because he said it would make my anxiety worse, despite the fact that a lot of my anxiety comes from my executive dysfunction. It has been incredibly validating to realize how many of the things I struggle with my whole life weren’t just moral failings or laziness, but undiagnosed adhd. The biggest struggle is that it’s so difficult to get a psychiatrist who takes insurance. I’ve been out of treatment programs for a few months and I still haven’t been able to start with a psychiatrist due to lack of availability or affordability. I’ve called so many and it’s been really difficult and it’s made more difficult by my adhd and other diagnoses getting in the way of me keeping up with it. And I know for a fact I am very privileged to have access to mental healthcare at all. The mental health crisis is a huge failing of the American healthcare system and it is costing the lives of so many.

Therapy needs to be decommodified and restructured in orientation towards anti-capitalist community.

I am just tired of people saying ur "ur not ___" cuz they see something online thats stereotypical and people also adopting a disorder from one symptom

I struggle a lot with balancing “explaining vs excusing.” At what point does asserting boundaries become a lack of compassion? Where do we distinguish between accountability and total, unwavering punishment? We have yet to figure out how to hold compassion for those who struggle with intense mental illnesses because those illnesses can sometimes cause abusive behavior. It is very difficult to have these conversations when there is the “unspeakable” category of people who cause extreme harm to others and they are then caste out, either through institutionalization or informal social rejection. I’m not suggesting that people start forgiving abusers or anything like that, but people who commit abuse of any kind have their own explainations as to why they’re doing it, so it seems that the conversation has to extend to them eventually, otherwise we are just adjusting the range of acceptable behaviors/illness without challenging the underlying reasons why people commit acts of abuse, which so far, has not helped us as a whole. Great video, Khadija ❤

"I have a little bit of the 'tism" is the new "I have OCD" Just because you do things that are a little quirky or different, does not mean you have autism.

On an IG post about a self-proclaimed psychopath, I recently commented that “people with ASPD are humans and deserve a place in society.” I was expecting some grief, with the exception of maybe two comments, the responses have been replies and DMs from people saying “thank you” and sharing their own experiences with stigma and having to constantly bite their tongues listening to conversations about someone’s evil narcissist ex/parent/etc, which honestly broke my heart. I think the DMs were to protect their own privacy on a public post, where people seemed very comfortable expressing hostility toward personality disorders in general. I hope this isn’t coming across as self-congratulatory. 😬 I just think there is a greater need for understanding and acceptance of MIs in general, but especially those that are less glamorized, and made out to be ‘ugly’, villainized and scapegoated. Thanks for another banger of a video!

Weaponising "therapy" theory is something I've seen and experienced too many times. Being called a narcissist because you are less reactive from learning to regulate your emotions. I think healing is a process that scares people who are comfortable with your unhealed version. But weaponising therapy phrases to manipulate a person is a "crazy" move. Loving the content, keep it up. We love it! Also. I'm learning a lot