Self-Diagnosis Is Valid, Godsdammit

Content/trigger warning: COVID-19, sick pet, murder, violent ableism, discussion of several axes of marginalization, cursing

I’m tired.

I’m tired of seeing the most vulnerable people in American society die of COVID-19 in terrifying numbers.

I’m tired of worrying about my emotional support cat, who has a thoracic mass pressing on her heart in addition to a diagnosis of mammary cancer. (I need help with transportation to and from the only vet in the metropolitan area willing to do a surgical biopsy and help with the surgery itself. Please share if you can’t donate: https://www.gofundme.com/f/help-b039elanna-beat-lung-cancer).

I’m tired of learning that yet another Autistic person has been murdered by their carer and thinking “that could have been me” (may Alejandro Ripley’s memory be a blessing).So you’d think that being tired of seeing ableist bullshit on Twitter wouldn’t be what I’m writing about, but it’s relevant, I promise. Not only is the topic I’m covering today currently a popular point of contention on Twitter, but it’s relevant because non-essential healthcare providers’ appointments aren’t happening due to the pandemic. So new professional diagnoses aren’t happening. It seems like a good time to talk about self-diagnosing with disabling conditions and how self-diagnosis is valid.

Let’s get one important thing out of the way first: being anti–self-diagnosis is ableist. Let’s get a second, even more important thing out of the way: anti–self-diagnosis is not only ableist, it’s classist, sexist, racist, transmisic, and probably other -isms/-misias that I’m forgetting. Where am I going with this?

Barriers to access.

Being professionally diagnosed is a privilege. In order to be professionally diagnosed, the following needs to happen:

  • You have parents who support your pursuit of a diagnosis or are in a position to be diagnosed without your parents’ involvement
  • There needs to be enough money for diagnostic procedures (and for a neuropsych eval, that was over $2k out of pocket when I paid for mine in 2014)
  • A healthcare professional willing to perform the diagnostic procedure(s) has to be available
  • Either the healthcare professional needs to not be biased toward misdiagnosis/denying diagnosis on the basis of gender, assigned sex at birth, transness, race, ethnicity, previous diagnosis/diagnoses, and probably other conditions that I’m forgetting or you need to be a white zedcishet male with no previous diagnoses and probably other privileges that I’m forgetting

So not only does it require a fuckton of privilege to obtain a professional diagnosis, there can be advantages to being professionally diagnosed. I’ve already talked about “scary” mental illnesses here (https://thisisforyoucarrie.blog/2017/06/24/scary-mental-illnesses/), and while being professionally diagnosed can be a path to access, accommodations, treatment, etc., being professionally diagnosed with a “scary” mental illness can also present barriers. I’ve had multiple psych professionals refuse to see me because my issues were too “severe” and/or because cluster B disorders like BPD are sometimes seen as untreatable. (Don’t @ me about DBT; I said sometimes.) Also, there are likely disadvantages to being diagnosed with conditions I don’t experience that I don’t know about. So it is a legitimate choice to not seek out professional diagnosis even if self-diagnosis has been made.

I’ve also noticed this misconception that self-diagnosis is shallow and ignorant, for example, seeing a meme about being disorganized and self-diagnosing with ADHD. I’ve also seen the misconception that self-diagnosis is minimizing disabling conditions, for example, enjoying cleaning and referring to oneself as being “lol so OCD.” The latter is not self-diagnosis and the former is highly unlikely (although seeing relatable memes can make one realize that they should research further). Self-diagnosis usually involves a lot of research, soul-searching, and engaging with community (I love Autistic Twitter, as can be inferred by my last entry). Speaking of Twitter, it was Disabled Twitter that gave me the aphorism “Don’t confuse an hour-long lecture with my lived experience” in response to some #DoctorsAreDickheads (thanks to @crippledscholar for that hashtag) blubbering about how baaaaaaaaad self-diagnosis is. Look, I’ve been through doctorate-level biomedical classes. They’re hard. I respect passing them. But I agree wholeheartedly with “Don’t confuse an hour-long lecture with my lived experience.” Self-diagnosis based on lived experience and autodidactic study is valid…yes, even if what someone learned in a one-hour lecture (or longer classes/labs, or whatever; the ultimate experts on disability are Disabled people themselves) says differently.

There’s also the matter of self-diagnosis often being necessary for professional diagnosis, i.e., that people don’t seek out professional diagnosis unless they believe they have a condition that warrants professional diagnosis. This is often touted as a reason why self-diagnosis is valid, but I feel like that’s sort of missing the point. Self-diagnosis is valid because…well, because of all the reasons I listed above, not because it’s a step on the way to professional diagnosis. That would imply that professional diagnosis has ultimate validity, which isn’t true.

Lastly, people who have been professionally diagnosed need to stop being assholes about self-diagnosis. We’ve been through that violent, oppressive gauntlet; why can’t we have sympathy for those who, for whatever reason, can’t endure that gauntlet? Not to mention the idea that self-diagnosis delegitimizes professional diagnosis is nonsensical bullshit and I haven’t the faintest idea why anyone would think that. I don’t even know how to argue with that point. It’s like trying to argue with someone who thinks the existence of the Main Asteroid Belt makes the sun dimmer. It’s so obviously not true I’m just gobsmacked.

That’s all I have for now. Stay safe. And wear a fucking mask.

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