You Should Un-Diagnose Yourself... Now!
Preface
This is not a formal essay. It’s opinionated and makes an argument, but I’m not going to cite sources. This doesn’t mean that I haven’t done my research; it means that my research was done over the course of several years without the intent to write an essay about it until very recently and I kinda just want it out of my head as something conclusive. No one has ever complained about this distinction, this is the internet, but I felt the need to mention it so my follow-the-rules part would take a chill pill. Do your own reading and come to your own conclusions.
As an additional disclaimer, this blog is about psychiatry and how online self-diagnosis is part of the wider problem with medicalizing things impacted by culture and trauma. There are times where I will be casual and just say “self-diagnosed,” “self-diagnosis,” etc. to refer to the concept, but I am really specifically talking about people that self-diagnose mental disorders within online communities only. I think this is pretty clear, but I wanted to just state it up front because reactionaries assume by default that this is the only kind of self-diagnosis that people do and I don’t agree with that. Also, I am including things like autism and ADHD when I say “mental disorder” because they are in the Diagnostic Statistical Manual of Mental Disorders and that's how specialists view them: as disorders. If that bothers you, good, you’re in the right place.
What Actually is Self-Diagnosis?
A lot of people that defend self-diagnosis will argue that it’s simply the first step of getting a professional diagnosis. However, that doesn’t actually reflect how most social media users approach it. When it comes to mental “disorders,” it’s pretty common for people to have no intention to see a professional because all they want or need is community and community-made resources. Many of these people do genuinely experience what they say they experience, or they at least experience something similar and latch onto one diagnosis’ explanation of it in particular. Most public scrutiny unfortunately sees self-diagnosers as the worst they have to offer—deliberate frauds, fifteen-year-olds that say they have six different personality disorders that contradict each other, influencers that are doing it solely because they want special attention and status. I don’t think this is an accurate representation of the average person with a self-dx online, but neither is the person that goes to get a professional diagnosis the second they figure it out themselves first.
My personal experience with self-diagnosis is varied. I sometimes view myself as having OCD to help make sense of my obsessive-compulsive patterns and know how to address them, but I have no intention to get diagnosed because there’s no treatment for it that isn’t already accessible to me without a professional diagnosis. I gave up on getting diagnosed with dyspraxia because I masked it for so long that specialists only notice that I move in an overly cautious way. I self-diagnosed DID before getting professionally diagnosed promptly after, and while I technically do meet the diagnostic criteria, my system does not function like a dissociative traumagenic one. I was professionally diagnosed with schizoaffective despite not really wanting to be as a teenager, and yet I still call myself schizophrenic even now that it’s been “corrected” to PTSD with psychosis in remission because it accurately conveys how I am marginalized. Identifying with a cluster B personality disorder both demonized me and gave me empathy for everyone I’d ever demonized myself.
All that has been a mix of helpful and harmful to me, often both at the same time. When I was chronically online in college, it was definitely more harm than help. I felt immense pressure to properly represent my conditions and it made me self-conscious to the point where I made fun of people that seemed more fake than me. I rushed into professional diagnoses that didn’t even validate me once I got them. I don’t self-diagnose for community and I never did. One self-dx made me feel so ashamed that I couldn’t even talk about it publicly online.
Despite all that, mentioning that I had DID to a psychiatrist I just met came with the immediate assumption that it was part of a social media trend long before the DID community garnered the amount of public attention that it has now. Simply asserting that I had a complex mental illness to someone new was seen as suspect, regardless of the fact that I only mentioned things I was professionally diagnosed with, regardless of whether I sought out the diagnosis or even wanted it in the first place. Even my ADHD diagnosis was once denied when I failed to describe all the major symptoms while crossfaded in an emergency room, though my autism was always agreed upon because I never make eye contact with psychiatrists. I don’t blame online communities for making me want to self-dx when I would’ve been better off not trying to label my mixed neurotype at all—I blame the mental health “professionals” that made it clear I’d never get real answers from them first.
Getting the Very Online Opinions Out of the Way
This isn’t supposed to be about online inner-community conflict, but I’ve had takes about that lodged into my brain since before I was an abolitionist and I think I have to mention them in order to move forward.
Putting my opinions on whether “mental disorders” are actually a meaningful concept aside, self-diagnosis can be good for people that have no other way of understanding themselves or knowing what resources to rely on without having a name to call it. When it comes to community and a sense of belonging, I think that neurodivergents should get to decide who they are for themselves without relying on a psychiatrist’s bias to decide for them. This is especially true when a professional diagnosis is inaccessible or simply not wanted for whatever reason.
That being said, self-diagnosis also disenfranchises people in online communities that have presentations significant enough for them to have been diagnosed without seeking it out themselves. I have seen so many people with self-diagnosed BPD discredit those with BPD that cause interpersonal harm because they believe that splitting is just an emotional thing, and by default, you’d have enough self-control to not externalize it. Likewise, autists that reclaim the term “low-functioning” are referenced like a bad stereotype that doesn’t really exist and get told their early diagnosis (and therefore subjection to abusive ABA “therapy”) was a privilege. At that point, who is the community even for? Neurodivergents get driven out of neurotypical circles only to then get driven out of their own spaces by the members that can mostly pass as neurotypical. That sucks.
Why Do People Identify with Mental Disorders?
If you coin a label, people are going to identify with it. They’re going to fill the niche and create a shared community around it. For complex mental experiences beyond depression and anxiety, one’s identity itself can be part of what gets called “disorder” according to psychiatry. This is especially true for personality disorders, which are defined by extreme variations of traits that basically everyone has at least a few of. As such, it only makes sense for certain people to identify with a mental disorder to feel affirmed and find like-minded people even if they don’t have the level of suffering and dysfunction that psychiatrists think is necessary to be diagnosed.
Psychiatry’s idea of distinct mental disorders that are as real as diabetes or cancer is unscientific, and the fact that people don’t treat them like they are should be expected. There is no biological or neurological component that defines a mental disorder. The diagnostic criteria for them is described in plain English and many of the tests to diagnose are designed with the assumption that someone taking it already has a high likelihood of having the thing. A specialist is already looking for it no differently than the self-diagnosed patient is. My question for those that identify strongly with a mental disorder that they researched themselves is why they overlook what they’re reading for the sake of validation, because not overlooking it should make almost anyone realize that this whole system is fucking busted.
The DSM Is Bad, Actually
Two different, unrelated patients arrive at a psych ward after self harming with possible suicidal intent. They both did it following a conflict with a partner and it seems that the outburst was an attempt to garner sympathy. They both have a history of rapidly changing mood, often involving aggression, and their relationships are unstable as a result. When they meet with the ward psychiatrist, they both insistently argue that they harmed themselves because their partner has a pattern of cruel or emotionally neglectful behaviors during conflict. When the psychiatrist suggests that they are attempting to shift blame, they both become extremely erratic and lash out. Their symptoms are near-identical, and yet the woman is diagnosed with BPD while the man is diagnosed with NPD. Everything the psychiatrist has been taught about these two conditions is profoundly unempathetic towards the patients that supposedly have them, but one is described using misogynistic language and the other assumes intentional disrespect for the psychiatrist’s authority, which is rarely assumed in “hysterical” women.
The diagnostic criteria for a mental disorder is not a tool for someone to identify symptoms in themselves—they’re made for the psychiatrist, and many diagnoses in the DSM happily provide these psychiatrists affirmation towards their bias. The difference between BPD and NPD often comes down to the patient’s perceived gender/sex and how much malice is ascribed to their behavior. Either way, they are assumed to be fundamentally irrational and unjustified in their outbursts. Someone’s support system is rarely questioned with these diagnoses, even with the large body of evidence saying that they often come with a history of chronic abuse. The field of psychiatry just doesn’t feel that their environment or lived experience matter enough to change how we treat them.
People who identify with disorders that are framed using cruel, unempathetic wording in the DSM end up viewing themselves in awful ways. Their social media is littered with advocacy to minimize stigma for these conditions, as if it’s a problem with the public’s misguided perception and not the powerful people that define the condition in the first place. Almost every person I’ve ever met in a trauma space that considered themselves to have NPD, both self-diagnosed and professionally diagnosed, could’ve easily been just called low (or varied) empathy with C-PTSD instead. The same could be said about BPD with their high (or varied) levels of empathy.
The harm caused by “mental health” diagnoses is pervasive, especially in my own life. Even years after I left my awful mindset about me being a sociopath behind, I still can’t ground myself without occasionally referring to myself as a narcissist. I said it before and I’ll say it again: that sucks. Should we really be trying to destigmatize the concept of a narcissist for people with NPD, or should we be questioning why the fuck it’s okay for the field of psychiatry to call the personality disorder for people that are emotionally fragile often as a result of childhood trauma “narcissistic”?
Psychiatry Can’t Keep Up With the Internet
A couple years ago, a research psychologist for dissociative disorders gave a talk where he described the rise of self-diagnosed DID from social media, advising staff on how to recognize the signs when that kind of patient walks into their office. A recording of this talk was shared publicly on the hospital’s official website, later removed due to public outcry over the fact that this psychologist used footage from several systems online without their consent as examples for what falsified DID looks like. I wasn’t online enough to notice it when it happened, but I couldn’t stop thinking about it once I did because this speaker just so happened to be the guy that diagnosed me with unspecified dissociative disorder. One thing that stands out to me more than anything else is his insistence that those with DID would feel too much shame to participate in online communities openly and talk about their symptoms the way that the examples did, because mental disorders are conceptualized in a vacuum and therefore aren’t subject to broader society issues. Everyone overshares on the internet—why would someone with DID be any different?
So many of the things considered signs of factitious disorder online are no different than their legitimate counterparts who are in the same communities because they feel like they should be there, oversharing just as much as everyone else. I overshared so much, partly because I wanted other people to know they weren’t alone and partly because I assumed I’d be seen as fake if I didn’t document everything about my life in the open. This kind of behavior would then be called fake by a psychiatrist; it’s a vicious cycle.
Diagnostic criteria for some conditions have been adjusted in recent years with the intent to gatekeep chronically online people rather than taking their unique presentations into account. Psychiatry narrows the criteria for mental disorders on what might as well be an arbitrary basis rather than one gained with further testing clarity, because if too many people suffer from this thing we consider rare, then it’s not so rare anymore is it? And if it’s not rare, then we can’t really justify aggressive forced “medical care” to make someone behave more neurotypically. Again, there is no biological or neurological component to any one single “mental disorder.” Much like IQ testing intentionally designed to make Black people look fundamentally less intelligent than white people, this is about manufacturing a bell curve to affirm the field of psychiatry’s existing bias.
The DSM-5 came out in 2013, more than ten years ago. It came out when TikTok didn’t exist, when social media was not used by almost every demographic or fueled by an intentionally addictive algorithm, when mental health resources weren’t as readily available to people online as they are now. Even with their smaller updates, there is never anything to account for how drastically our social and political landscape has shifted since 2013 beyond identifying new risks of factitious disorder. When the criteria changes to keep everyone that isn’t the perfect archetype of their respective neurotype out, then those people have no choice but to self-diagnose.
Medical Gatekeepers Are in It for Themselves
I was diagnosed with UDD and later DID using the Multidimensional Inventory of Dissociation, shortened to MID. I referenced my experience with this test in an autobiographical piece that I published on this website, specifically the part where a question acknowledged my internal voices and it unsettled me. Originally, it was something like “someone has been reacting to these questions inside my head” or “a voice inside my head has been reacting to these questions.” Wanting to be more accurate than my somewhat inexact memory, I looked up the test and found it freely available along with the answer guide on their official website. It turns out that they changed the question to read something along the lines of, “another part of me has been reacting to these questions inside my head.”
The “part of self” language is introduced to most dissociative systems during therapy. It is almost never the way they describe their system members by default, even before they know a word like “personality,” “alter,” or “headmate.” Most people with undiagnosed DID have no reason to view their internal voices as parts of themselves—this is well-documented in overt dissociative systems, especially children in studies that compare alters to imaginary friends. The change in wording is meant to weed out the malingerers that only know how to embody the most sensationalized form of multiplicity, and yet it’s impossible for it to not also weed out systems that didn’t already read a book about dissociation beforehand. Is this really about ensuring that resources go to the right people, or is it mostly about covering a psychiatrist’s ass?
When specialists change how diagnostic criteria works or make public statements about self-diagnosed people online in spaces readily available to them, the harm it causes to actual fakers is negligible. Many of these people do not seek out a professional diagnosis in the first place and those that intentionally malinger will either just adapt to the new criteria or keep doing what they’d been doing since before social media existed. The same lack of harm cannot be seen in the people that actually have said conditions while falling in similar demographics as the potential fakers. I have seen countless young people be denied even something as common as an OCD diagnosis that they already received professionally because a new provider was inadvertently taught to not believe teenagers in colorful alternative clothes. People with power in psychiatry will insist that’s not their intent with medical gatekeeping, and yet they continue to do it despite the fact that it’s clearly the result regardless of intent. They certainly won’t publicly apologize to the systems that they used as examples for what faking online looks like without those systems ever having been personally assessed in their offices.
Professional Diagnosis as an End Goal
There is a lot of fear-mongering from online autistic self-advocates about professional diagnosis, much of which is just misinterpreted facts. In the US, you won’t lose job opportunities solely because you received a professional diagnosis—that is protected by HIPAA by default, though you’ll get fired for having a meltdown on the sales floor regardless of whether you are self-diagnosed or professionally diagnosed. Likewise, one doesn’t need to be rich to receive a diagnosis; you just need insurance that covers someone capable of diagnosing you. There are reasons why professional diagnosis for a mental disorder can be dangerous, however, and those that gun for it being the end goal of self-diagnosis rarely consider this.
A few years ago, I was lurking in the ASPD tag on Tumblr and noticed one person that was very insistent that ASPD did not result in bad behaviors that harmed others, as it could be controlled and one was responsible for their actions. They felt confident in this because they had never done anything meaningfully harmful to others themselves. When someone pretty casually responded that that wouldn’t be ASPD then, they spent the next couple weeks aggressively seeking out a provider that would diagnose them. When they finally had their professional diagnosis, they returned to that other user to tell them, “See? Proof!”
This other person didn’t really remember who they were and didn’t care, obviously. Meanwhile, I was completely horrified. Someone determined that they had ASPD, a condition that is generally considered to be the Unremorseful Impulsive Untreatable Criminal disease, without actually having any impulse control in regards to criminal behaviors. They proceeded to convince an unknowing psychiatrist that they had this because they described their symptoms in the same language as the ASPD diagnostic criteria and filled out the form with that language in mind. Despite never having committed a crime, never having put themselves or another person at risk, they willing went out and acquired what is equivalent to a criminal record for the sake of validation online.
Mental disorders come with systemic oppression, not just social stigma. A late-diagnosed autist won’t get fired the second it’s on paper, but they lose their children in custody battles because they’re seen as immature and incapable all the time. People with BPD are far more likely to have their undiagnosed physical health problems dismissed as part of mental illness, and they’re also more likely to be held in a psych ward over non-suicidal cutting while their non-BPD counterparts remain free. The presence of ASPD and/or NPD can lengthen a criminal sentence, put someone in prison for years when their non-PD counterparts get a few months and a fine for the same crime, even give someone the death penalty with the assumption that they inherently lack remorse and the ability to change. This is especially true for Black and brown people, though generally it’s only white people that are stupid enough to get professionally diagnosed with ASPD for validation points. If you view your sense of gender and spirituality as part of your psychosis, getting professionally diagnosed will do the opposite of validate it—they will try to medicate it away and prevent you from transitioning. Mental illness communities online function very differently than the offline medical world. Psychiatry’s goal is always to make you have as little as the symptoms as possible, including the ones you like or benefit from, because they want you to be neurotypical.
If you are considering getting professionally diagnosed with a mental disorder that you’ve identified yourself already, please think about the ramifications of being permanently labeled with that specific condition and ask yourself if the reasons you want to be diagnosed would make the risks worth it. If you want medication, you can generally be prescribed those based on symptoms without a full diagnosis if that medication isn’t a controlled substance. Therapists are capable of treating and affirming your self-diagnosis without actually putting it on paper. Someone doesn’t have to be a specialist to have experience with your neurotype and use the treatment models that work best for you personally. A diagnosis is often required for accommodations in educational or work settings, but it rarely needs to be as hyperspecific as the label someone online finds validating.
For some people, a professional diagnosis after you self-diagnosed the condition can be affirming. For others, that affirmation is fleeting. My PCP who barely knew anything about dissociation in the first place did not change anything about her approach to my healthcare when I got diagnosed with DID. New doctors still questioned my multiple serious diagnoses and took their own notes on what they thought I really had based on five minutes of conversation, and the ones I fought the hardest to get recognized are always the ones they opted not to keep a record of. Staff at the ER after an attempt denied that I had schizophrenia because I had been medicated for ten years and didn’t appear to be having my first psychotic break directly in front of them. The family that didn’t believe me before didn’t start believing me when I got diagnosed and friends that were worth keeping believed me whether my diagnoses were on paper or not. Most importantly, my exclusionist community did not care. Anyone can just say they're professionally diagnosed. If you’re crazy and desperate enough to post the uncensored paperwork like I did, the people that don’t believe you will call it a Photoshop job. Wanting validation alone should never be the reason one gets professionally diagnosed with something.
If your symptoms are covert enough for you to have control over who gets to know about what you have, isn’t that a good thing? Isn’t it better to have the ability to open up when you’re ready and know that someone is trustworthy? I wanted to work with a transmasculine or nonbinary therapist in my area and every single one turned me away because I was diagnosed with big, scary mental disorders that they decided they weren’t qualified to treat without even speaking to me once. I once found a therapy place that was full of almost exclusively trans people, all of which were big into creative storytelling and super pro-kink, and requested a transmasc therapist who would be respectful about my multi-gendered system. After a couple weeks of waiting, the intake person emailed me back saying that they had an opening with someone “qualified...” a white cisgender women who mentioned nothing about storytelling or kink or queerness, the archetype of every other therapist that failed me. I wouldn’t wish the way I felt when I saw that email on anyone.
Empathy in Spite of Medical Demonization
Notice how I haven’t mentioned the risk of being “wrong” when it comes to self-diagnosis and hurting oneself in the process. Virtue-signallers are against self-diagnosis for this reason: people get it wrong and then they sway the psychiatrist without intending to because they are already viewing their symptoms through that lens, which makes it harder for them to get real help and negatively impacts their sense of self. I don’t really care about this outcome specifically because the harm it causes is generally no different than the harm it’d cause for someone who legitimately meets criteria to be subjected to the same marginalization. It’s fucked up that it happens to them, too.
In college, I dated a self-proclaimed sociopath, and if I validate the concept of mental illness to begin with, I do agree with the assessment that he had ASPD. His behaviors influenced mine, so I started viewing myself in the same way as him. When I became self-conscious about whether I could say I had something like that without a professional saying it first, I rushed to my therapist to request a diagnosis—stupid white person shit. She went down a list of the criteria for ASPD and said that I certainly seemed like I met enough of them, but didn’t actually write it down because it would marginalize me. The idea that I had ASPD wasn’t completely baseless, I certainly had a background that lined up with it, but it was such a cruel, unforgiving way of characterizing someone with my presentation. When I told my boyfriend about what my therapist said, he responded that I was “officially a bad person.”
I was open about this diagnosis with him, but ashamed of it in all other circumstances. I couldn’t mention it on Tumblr after I got called out, fearing that it’d be proof to people that my mistakes were fundamentally malicious and I was incapable of change. It was horrible, and yet at the same time, viewing myself as a person with fundamental flaws in this way was what helped me figure out how I needed to change. It couldn’t just be an apology or promising to not do the bad thing again. I had to reflect on myself and learn to become someone kinder, more empathetic, more understanding, more forgiving.
I felt that I was unforgivable after I got called out, even when I logically understood that none of what I got accused of happened in the way it was described, if it even happened at all. Seeing myself change in spite of my so-called ASPD taught me that it was possible for me to be redeemed, not because I personally was always good inside, but because everyone is redeemable. This was the foundation of my stance as a prison abolitionist, the idea that someone should never be defined by their worst decision or the personality disorder that allegedly explains why they made it.
The treatment for ASPD does not involve this level of compassion or understanding. A therapist that I sought out specifically because they worked with antisocial people thought very little of said people. I went to therapy hoping I could get help with the ways my stunted ability to empathize negatively impacted my romantic relationships and these problems were all dismissed as “not a big deal” because the only real treatment goal was for me to not commit crimes. Almost all research for ASPD is done on people with criminal records that are further marginalized upon release and aren’t given the support necessary to not just go back to disregarding the law, and that’s what shapes how they are viewed by psychiatry at large. Online communities for ASPD aren’t filled with the nicest bunch, and yet there is an obvious shared understanding of the ways they are wronged in society that I don’t see almost anywhere else. Many of the people in these communities are self-diagnosed, and many of the professionally diagnosed ones recommend that they stay that way if they can.
When I first wrote my incarcerated friend, I vaguely referenced the idea that I had a personality disorder without ever naming it. After about a year of being penpals, I let go of having strict terminology for myself, and by the time we were talking on the phone, I didn’t believe in the concept of distinct mental disorders at all anymore. I was completely secure in my beliefs about not defining people by their worst actions, but I understood that I’d probably find out what my friend’s crime was now that we were closer and some part of me was nervous. I kept waiting for the other shoe to drop. Would I feel differently about them once I knew, even if I told myself that I wouldn’t? What would that say about me and all my progress if I did?
They never told me directly, but they casually talked about it like we already both knew until I could put the pieces together and realized that we had the same history. If my abuse had not ended when it did, I would’ve done the exact same thing. When they said that they have BPD, it changed absolutely nothing about how I saw them. No one is defined by what an unempathetic psychiatrist thinks of them when they’re at their lowest—not them, not me, and not you.
Critical Thinking and Anarchist Destruction
At one point in my journey to eventually abandoning social media completely, I spent a decent amount of time trying to make Reddit work for me. Quick to anger in communities that were actually applicable to me, I tried just lurking in communities that I wasn’t part of at all—don’t do this, you end up on r/parenting and witness nauseating levels of child abuse. I remember one of these posts extremely clearly, where a mother asked for advice with her five-year-old daughter that had oppositional defiance disorder. Her daughter was diagnosed because she misbehaved in kindergarten, though she did not misbehave at home. She said that punishments weren’t working no matter how severe they were and proceeded to explain that her husband took the “military approach,” which meant that he was currently denying her access to all of her toys until she started being respectful to her teacher. The OP felt this was excessive, though she dismissed people urging her to stop her husband. She only wanted advice for what she personally could do to properly discipline her daughter while her husband continued to psychologically torture her, because it only made sense to stop him if there was an alternative that actually worked. A child that was being abused by her parents could only feel safe misbehaving with a teacher that wasn’t also abusing her, and in response, a medical professional told this child’s parents that she was misbehaving because there was something fundamentally wrong with her.
The diagnostic criteria for oppositional defiance disorder does not mention a single thing about the internal experience of the patient or any potential environmental factors that could trigger their behaviors. It is purely defined by their temper, bad behavior, and lack of obedience. Context is seen as not meaningful, and that is the case for almost every diagnosis in the DSM. Like, for fuck’s sake, in Other Conditions That May Be a Focus of Clinical Attention, the section for child physical abuse states, “Physical discipline, such as spanking or paddling, is not considered abuse as long as it is reasonable and causes no bodily injury to the child.” This steaming hunk of shit manual that online mental health communities worship like the Bible asserts that there is a reasonable amount of physical pain that can be inflicted upon a child by the people that they are required to rely on for support, resources, and comfort. I’m glad some people feel affirmed by a BPD diagnosis, but the psychiatrist that diagnosed you probably did it because they don’t believe that abuse can cause anything except nightmares, trigger avoidance, and flashbacks.
A mental disorder isn’t an identity and it shouldn’t become one. They were conceived to oppress and marginalize people that are traumatized and/or don’t conform to society. They want you out of public life, medicated to the point where you’re too numb to act weird, or spending every waking moment religiously performing behavioral therapy rituals so that you are polite to people that treat you like shit. Take a look at the diagnostic criteria of what you think you have and realize, “Hey, that’s a fucked up way of talking about people like me.” Recognize that it’s wrong and say something. Stop being complacent as psychiatry bosses your community around and disrespect the diagnostic labels that you’re all fighting to defend. You exist whether the DSM has a name for what you are or not, so define yourself on your own terms, not the terms of some jackass old white dudes that think there’s something wrong with you.