10 ms·

The people in the communities believe in a moral right to having self-diagnosis believed. Having a diagnosis is almost considered a form of privilege reserved

The people in the communities believe in a moral right to having self-diagnosis believed. Having a diagnosis is almost considered a form of privilege reserved for wealthy white males, an observation rooted in scientific evidence of systemic under diagnosis for minorities and women. It is a banable offense from disability communities to doubt somebodies diagnosis. I was told nobody lied about faking a diagnosis, so I faked a diagnosis under extremely suspect circumstances, was believed, revealed my deception, and was permanently banned. Regardless of the morality of my actions, the point is that people want to truly believe that everybody they meet that self-diagnose themselves with disabilities is valid, and anybody who attacks this delusion is an enemy to be expelled from the community, even if such a person is doubtlessly disabled. The way I see it, ideology has become more important for membership in these communities than actually having a disability, because somebody ideologically misaligned is a threat to “safety” or whatever. I’ve seen people call for moderators to be taken out over “fakeclaiming”. I find the entire ideology espoused in TikTok to be deeply naive and grounded in a false implicit assumption that a label of disability will make peoples lives better and thus to deny them that label is some sort of cruelty. I’ve been in conversations where somebody asks “am I diagnosed”, they will describe something that disqualifies the diagnosis, I point out no they can’t be they don’t fit the criteria, and others in the thread will start saying “oh they must not have meant that they must have meant this” and I’ll just sit there stone cold fucking baffled. I wonder how many people will suffer untreated illnesses because strangers on the internet talked them into thinking they had a developmental disability when they really had hypothyroidism or something because they treat not having a diagnosis like failing to catch a Pokémon.

bananamerica 4y ago
I see accepting self diagnosis online as a practical measure. Since it is not possible for an online community to ascertain wether someone qualifies for a diagnosis or not, discussing it is entirely unproductive and a wasp's nest. That doesn't mean everyone truly share's the same diagnosis, only that there's nothing to gain by doubting what they're saying. A lot of people arrive at these communities due to their insecurities and personal pain, and it's not helpful to go around pointing fingers saying "you're not part of this group". They're support groups, not medical boards.
- faeriechangling 4y ago
  It's not a matter of simply pointing fingers though, even alluding to there being a general issue is controversial, virtually all opinions other than "We're not experts but you're probably disabled" are wrong. You mention going to doctors, if somebody goes to a doctor, and the doctor says they're disabled people say congratulations, if the doctor says they're not disabled people will criticise and say "bad doctor, doesn't know their job, see another doctor until you find a REAL doctor". This TikTok thing is a fantastical world where the more visibly and stereotypically disabled you act, and the more diagnosis's you have, the more people give you positive attention. The presumption is though that it would be a terrible burden to impose on somebody to tell them they aren't disabled is what has brought us to the status quo in the article. My experience is that a lot of the time, being diagnosed doesn't help people, and in fact subjects them to stigma, it does result in reification. I've seen people react to labelling themselves with a disability with significant self-destructive personality changes caused by self-victimisation. Mostly I feel resentful towards the medical system who really caused this nonsense to be inevitable by making people feel nobody will help them unless they apply some unflattering label to themselves first thus making them insurable.
  - prox 4y ago
    Still afaik I don’t think it’s effective to mingle in that community. People sometimes need to come to conclusions on their own, and adversial stances usually don’t work, especially if there is a feeling of victimhood or other insecurities playing along. This is especially true online where advocating for A automatically seems to mean you are against B. The labels aren’t the problem per se, but how we go about treatment, communication and building healthy psyches and ego is.
  - bananamerica 4y ago
    A correct diagnosis will help if it leads to adequate treatment. Sadly, not all diagnosis are correct, and not all treatments are equally effective for a given patient. I agree with your assessment that unhelpful group behaviors are fueled by a failure by the health community in addressing these issues. I would also add that we're facing a societal failure which may lead perfectly healthy individuals to "treat" their pains by exaggerating their idiosyncrasies in order to be accepted in a group that they feel is more protected and understood. And the sad part is that this perception that they will be automatically protected and understood by a diagnosis is largely false, and you're right: a diagnosis can make many things worse. I would trade all "protection and understanding" I got from my diagnosis for the ability to wake up every day and be able to function without pumping meds into my brain.
Test0129 4y ago
> The people in the communities believe in a moral right to having self-diagnosis believed. Having a diagnosis is almost considered a form of privilege reserved for wealthy white males, an observation rooted in scientific evidence of systemic under diagnosis for minorities and women. This, in and of itself, would seem to warrant some sort of mental illness. Victim complex, perhaps? I had interpreted this trend as something different. Kids wanting to be outliers because being an outlier is cool. Claiming some, realistically debilitating, mental illness makes you special (at least in the "different" sense). This gives lonely teenagers a sense of belonging and something that differentiates them. Most of them could probably be diagnosed with narcissistic personality disorder but I am not doctor. I suppose this isn't new. When I was a kid the kid in class that showed up with a cast was pretty cool for the time they had the cast. Everyone loves an outlier. As someone who has struggled with a mild-to-medium form of ADHD, only getting a formal diagnosis late in life, I am baffled anyone would want to pretend to have a mental illness. Yet, here we are.

bananamerica 4y ago

I see accepting self diagnosis online as a practical measure. Since it is not possible for an online community to ascertain wether someone qualifies for a diagnosis or not, discussing it is entirely unproductive and a wasp's nest. That doesn't mean everyone truly share's the same diagnosis, only that there's nothing to gain by doubting what they're saying. A lot of people arrive at these communities due to their insecurities and personal pain, and it's not helpful to go around pointing fingers saying "you're not part of this group". They're support groups, not medical boards.

faeriechangling 4y ago
It's not a matter of simply pointing fingers though, even alluding to there being a general issue is controversial, virtually all opinions other than "We're not experts but you're probably disabled" are wrong. You mention going to doctors, if somebody goes to a doctor, and the doctor says they're disabled people say congratulations, if the doctor says they're not disabled people will criticise and say "bad doctor, doesn't know their job, see another doctor until you find a REAL doctor". This TikTok thing is a fantastical world where the more visibly and stereotypically disabled you act, and the more diagnosis's you have, the more people give you positive attention. The presumption is though that it would be a terrible burden to impose on somebody to tell them they aren't disabled is what has brought us to the status quo in the article. My experience is that a lot of the time, being diagnosed doesn't help people, and in fact subjects them to stigma, it does result in reification. I've seen people react to labelling themselves with a disability with significant self-destructive personality changes caused by self-victimisation. Mostly I feel resentful towards the medical system who really caused this nonsense to be inevitable by making people feel nobody will help them unless they apply some unflattering label to themselves first thus making them insurable.
- prox 4y ago
  Still afaik I don’t think it’s effective to mingle in that community. People sometimes need to come to conclusions on their own, and adversial stances usually don’t work, especially if there is a feeling of victimhood or other insecurities playing along. This is especially true online where advocating for A automatically seems to mean you are against B. The labels aren’t the problem per se, but how we go about treatment, communication and building healthy psyches and ego is.
- bananamerica 4y ago
  A correct diagnosis will help if it leads to adequate treatment. Sadly, not all diagnosis are correct, and not all treatments are equally effective for a given patient. I agree with your assessment that unhelpful group behaviors are fueled by a failure by the health community in addressing these issues. I would also add that we're facing a societal failure which may lead perfectly healthy individuals to "treat" their pains by exaggerating their idiosyncrasies in order to be accepted in a group that they feel is more protected and understood. And the sad part is that this perception that they will be automatically protected and understood by a diagnosis is largely false, and you're right: a diagnosis can make many things worse. I would trade all "protection and understanding" I got from my diagnosis for the ability to wake up every day and be able to function without pumping meds into my brain.

Test0129 4y ago

> The people in the communities believe in a moral right to having self-diagnosis believed. Having a diagnosis is almost considered a form of privilege reserved for wealthy white males, an observation rooted in scientific evidence of systemic under diagnosis for minorities and women. This, in and of itself, would seem to warrant some sort of mental illness. Victim complex, perhaps? I had interpreted this trend as something different. Kids wanting to be outliers because being an outlier is cool. Claiming some, realistically debilitating, mental illness makes you special (at least in the "different" sense). This gives lonely teenagers a sense of belonging and something that differentiates them. Most of them could probably be diagnosed with narcissistic personality disorder but I am not doctor. I suppose this isn't new. When I was a kid the kid in class that showed up with a cast was pretty cool for the time they had the cast. Everyone loves an outlier. As someone who has struggled with a mild-to-medium form of ADHD, only getting a formal diagnosis late in life, I am baffled anyone would want to pretend to have a mental illness. Yet, here we are.