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8:43pm August 2, 2014
tarvalonsjw asked: I don't feel like arguing on an already long post, but the reason self-diagnosing mental illnesses CAN actually be super harmful when it comes to treatment is that people (including medical professionals) will look at these self-diagnosed people as actually how those who are diagnosed by a doctor are. A lot of people who self diagnose mental illness do not do the actual research past wikipedia and a few google sites. The more complex and rare your condition, the more (continued)

bittersnurr:

(cont) likely it is it will take a long time to get a correct diagnosis. And when I finally got a correct diagnosis of all the coughing up blood I was doing, it was because I was reading medical journals and talked to my pulmonologist and he started investigating that. I couldn’t treat it myself, and if I hadn’t had a doctor look into it, I probably would’ve eventually died. I couldn’t just say “I have pulmonary arteriovenous malformations” and be done with it.

Also, I constantly complain that I obviously have the symptoms of PTS, but because pain clinics are so used to people making shit up for pain medication and saying “oh I have such and such please give me vicodin” that is a physical illness that I am unable to be treated for because addicts are saying they have back issues or some shit. So it’s not a black and white issue, and both sides are valid for different reasons in the united states at least. Our healthcare system is fucked.

Here is the thing though. the people who just self diagnose with stuff without researching first exist but how often do you actually see them?

Like the only time I have seen any of these people in the last few years is by going down rabbit holes and finding communities where that is acceptable. I remember it being a fucking epidemic back like 10 years ago on deviantArt during the “emo” fad but I have not seen it being done in an openly and being in any way acceptable since. And yes, that did do damage, but it’s the exact same situation as like with disability. People are really worried about the people faking and “stealing” benefits but it is a minuscule number.

Anyone in the -actual- mainstream illness community though? I haven’t seen that happen. Because if anyone knows what an illness looks like it’s the people with the illness. If someone is not intentionally faking and putting on an act (at which point it becomes straight up fraud and not self diagnosis) they are going to stick out with their incorrect account. And if the person ISN’T being an asshole the community should be able to tell.

I guess you could say I’m pro “peer diagnosis” (you ask everyone you can find familiar with the condition their opinion after researching possible options). This can include people with the illness, caregivers, social workers, medical personnel anyone you can who knows things. The bigger pool the better.

Also I didn’t say don’t get a diagnosis ever? Like I did say I have 0 self diagnoses currently right? That’s because for EVERY ONE of them the first thing I did was see a doctor. I would say the only exception to this is 1) I purposely ignored my GI issues for years because I didn’t want a butt exam because I am really traumatized from horrible pap smear assault crap
2) I don’t bother with stuff like ex. pain anymore because I know there isn’t any point at all

Obviously if you have dangerous symptoms see a doctor if you can, but this isn’t about self diagnosing with cancer or something it’s about self diagnosing with anything period. Including simple things that can be treated yourself at home.

There is a BIG difference between self diagnosing a potentially fatal illness and self diagnosing a manageable case of depression or acid reflux, or even something like fibro because like hell if the doctors even test for fibro anyway I’ve had 3 doctors tell me i had that without even touching me based on “tired and pain”. =

 There are a lot of things that have at least SOME treatment options that you can access yourself. You can treat depression with counseling, reflux is an easy OTC pill, there are a few fibro treatments available to try as well (the mito cocktail apparently occasionally effective). Obviously it’s not as good as ALL treatment options but if your choices are that or nothing it’s still better?

I am confused? You are saying you researched you went to the doctor and he checked it out and diagnosed you? That sounds identical to every one of my “self diagnoses” except your doctor listened. My point if the doctor DOESN’T a lot of the time. So I researched my symptoms, went to the doctors and was told it was fibro and to exercise (no tests were done).

The resource of doctors is not always available. Even if you live somewhere with a huge selection of doctors, have decent insurance, have money etc. Self diagnosis is for when there is no option of official diagnosis. It’s not a thing you just leave and be done with unless it’s something that you can’t do anything about.

Like for example, the sensory processing disorder is not *technically* official because the person who diagnosed me was an adult OT not a child OT and apparently you have to have a childhood OT diagnose you with that. If I want that diagnosis to be ~official~ I would have to pay thousands of dollars out of pocket (child OTs are obviously not covered for adults) to go to a specialist who will look at me and tell me the exact same thing the other one did. Also the treatment is therapy, which the OT already went over with me and it consists of entirely 1) coping techniques I already had to learn to function years ago 2) coping techniques (stimming mostly) that are regularly on my dash because I follow a bunch of autistic people.

Do you honestly think in a scenario like that I need a better diagnosis in this scenario?

The big problem I have is brushing all unofficial diagnoses with the same brush. It’s not black and white and it is straight up treated that way. Even if you aren’t disagreeing with me the tone of that doctor’s post I was yelling at isn’t. At all. It’s “go to the doctor”.  I especially like the part about “it sucks you CANNOT ACCESS MEDICAL CARE AT ALL but self diagnosis is totally dangerous and not ok even then” and “don’t EVER”.

Yes, self diagnosis isn’t always a good idea, you shouldn’t do it with everything, and it can be dangerous.

BUT

Official diagnosis can be too. I’ve been on steroid inhalers for asthma that didn’t exist (was never tested), been given pills toxic to my illness,  prescribed drugs with well known interactions (I was told “yeah I know” when I called to complain), turned away before even making appointments, refused tests, refused medicine, refused therapies.

I’ve known people who faked things.  And who did a lot of damage by faking things.  I’ve known people who self-diagnosed frivolously and did a moderate amount of damage.

Both of those pale in comparison to the amount of damage done to self-diagnosed people who aren’t taken seriously by their communities, which are encouraged to shun them as trendy fakers and the like.

And believe me I know the loss of trust that can happen in a community when a community member turns out to be an expert faker who is nothing of what they said the were.  I know how soul-destroying it can be to have poured everything into a friendship with a master manipulator who used both real and fake illness as one of their points of manipulation.  I know how hard it can be to trust again after that.

I also know that self-diagnosed people are the victims there too.  Because they get lumped in with the manipulators, and they are not the same thing.  And even the worst damage done by one of those manipulators, is not as bad as the damage spread over the self-diagnosed people when everyone becomes suspicious of everything else.  What happens then is that suspicion falls on anyone different – on the self-diagnosed, but also on anyone who deviates from the standard narrative for whatever the illness or condition is.

And I know all about deviating from the standard narrative.

I do it all the time.

And in fact, those deviations have turned out to be vital for securing a correct diagnosis.  But in some of these communities, they’re enough to label you a faker or a self-diagnoser (and they see the two as the same thing).  If you aren’t exactly as they expect, they’ll be suspicious.

But for instance… when treatment for adrenal insufficiency didn’t cure all of my muscle weakness, instead of going “sie must be faking”, they started testing me for lots of other things, resulting in an abnormal single fiber EMG, meaning I probably have myasthenia gravis.  If they’d stopped at “This doesn’t look right for adrenal insufficiency,” they’d have got nowhere.

And that’s just a simple physical example.  With things like psychiatry things get really weird and murky and it amazes me the power people give to doctors over things like that.  You honestly don’t need a doctor to know whether you’re autistic or not.  There are other ways.  And coming down on self-diagnosed people does real harm to real people that goes far beyond any harm that any kind of self-diagnosing does.

Notes:
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  7. familiaralien said: G has been put on many meds for the wrong illness that made him way sicker. Also first doctor didn’t even properly evaluate my mental illness when we first met and wouldn’t change the diagnosis when it was proven wrong. Doctors can be dangerous too.
  8. withasmoothroundstone reblogged this from bittersnurr and added:
    I’ve known people who faked things. And who did a lot of damage by faking things. I’ve known people who self-diagnosed...
  9. tarvalonsjw said: also if my ability to articulate my ideas is confusing right now, I apologize. I can’t think straight atm.
  10. tarvalonsjw said: outside of tumblr for well over 7 years, so my view may be skewed.
  11. tarvalonsjw said: listening is far worse than the percentage of patients who self-diagnose without doing anything about it. I guess I just have a hard time totally discounting either side of the issue, but I also haven’t actively participated in any support forums
  12. tarvalonsjw said: isn’t a black and white thing that people can just say all self diagnosis is incorrect and wrong, but they also can’t say all doctors don’t know what they’re doing or don’t listen because some don’t. And I’m sure the percentage of doctors not
  13. tarvalonsjw said: diagnosis is something I obviously agree with since like you said and many people say - doctors do not always listen, and I know that. I know I have been pretty lucky even in my shitty situations that eventually I find someone to listen. And it
  14. tarvalonsjw said: I guess my definition of “self diagnosed” isn’t the same as yours, most of the time when I see people who have self diagnosed, they seriously do not actually see anyone. They just say “I have x and you can’t disagree because I fit x”. Peer
  15. bittersnurr posted this