Thread by @fohfuu

My entire experience of being diagnosed* with bipolar is why I support self-diagnoses after years of being firmly against it.

An anecdote for self-diagnosis critics to consider.

What initially sparked me to do so was doing an internet quiz and scoring really highly. Everyone knows they're not really meaningful on their own, but after a few months, the inability to budget or even make plans was starting to become untenable. I took it to my GP.

"I'm not self-diagnosing, it was just a quiz! A psychiatrist will know way better than me."

Idk if he wrote down a referral "self-diagnosed bipolar" or "suspects bipolar" or whatever, but when (a year later) I got a psych, it was a goddamn INTERROGATION.

The guy spent the next hour asking me questions and berating me after every single one how it totally wasn't symptomatic of bipolar. I wasn't arguing! I agreed with every denial he made, but he just didn't let up.

Keep in mind that whenever I talked about this to anyone, it was couched in disclaimers that I was just speculating. I was not claiming I had it, not until far after this appointment.

It was so weird that I'd think I was misremembering if hadn't brought someone with me.

At the end of the appointment, he sent me to the receptionist, who said they'd fax my GP the prescription for lamotrigine (Lamictal for the yanks).

Spent an hour haranguing me for thinking I could possibly have bipolar, then gave me mood stabilisers.

Hm.

After talking with my companion, or witness, I guess, it became obvious I didn't do anything wrong and he was clearly biased against me

Sure, I spent all the money to my name in 3 months on random garbage, but I wasn't in debt, so I wasn't bipolar. Hm.

He did, correctly, identify that I wasn't manic.

I would like to point out that experiencing mania is not a bipolar II symptom. In fact, it rules it out. It's a bipolar I symptom.

I never claimed to have either in particular.

Always said it couldn't be (full) mania.

The mood stabilisers worked.

I was given a new psychiatrist after my first left the NHS.

The new one did a much more normal evaluation and then said...

"I'm not going to diagnose you with bipolar, but..."

She just doesn't like labels. Refuses to use them. 😐

In the US, there's this thing where psychs HAVE to (or at least, think they have to) give the patient a preliminary diagnosis by the end of the first appointment. It's why USians are more likely to have a rap sheet of MI diagnoses than one or two.

We don't have that here.

So I was now stuck in a very weird limbo, where my psych had explained she would diagnose me with bipolar if she gave people diagnoses, but didn't officially diagnose me with bipolar.

I am, by the way, an archetypal presentation of bipolar II. It isn't really a debate.

People said she didn't make it official so that I wouldn't be stigmatised.

They don't understand that not having an undiagnosed illness is a stigma in itself.

If you don't have a diagnosis, it's assumed it hasn't been investigated, and that you're just being hysterical.

Well, every time I had to talk to a medical professional in the next couple of years, I'd go through this whole disclaimer process every time they asked me my medical history. "Not an official diagnosis!" etc. etc.

Eventually, someone wrote it in sans caveats.

There were tens of hands that got in my notes. I haven't a clue who did it. Nonetheless, after a point, whenever someone went through they'd take it as fact rather than heed my equivocation, so I just stopped equivocating.

I had it according to my notes, "official" or not.

And I was sick and tired of it by that point. I'd been describing my unmistakable bipolar with these caveats for years, and it pissed me off more and more every time. I was never going to be 100% "diagnosed", even though a psychiatrist basically admitted I should be.

I've taken my meds ever since, I don't get mood cycling. I felt more myself on them than not as soon, as it kicked in, and still feel that to this day. I realised I fit the dX even better than I thought I did when several common comorbidities became apparent.

So, dear self-diagnosis persecutor: am I self-diagnosed? Am I officially diagnosed? Am I doing something wrong when I say I was diagnosed?

Do you understand why after this, I was more interested in descriptive diagnoses for my comorbidities than rubber-stamped ones?

I'm not saying doctors aren't important and that they don't (usually) know more about their specialisation than you. But sometimes they don't. Sometimes they do, but they're in a bad mood, or don't think you deserve the validation, even if you're right.

I took an anti-self-diagnosis stance that entire time, making it clear to every doctor I came across. It didn't do me a spit of good.

I highly doubt the middle-aged doctor who chewed me out for my humble suggestion even knew what Tumblr was.

It took me years to get anyone to even investigate my physical illness, and as a non-expert, I couldn't get an answer because my symptoms are common and illness itself (Functional Neurological Disorder) is common but underdiagnosed and the research is comparatively new.

My best guess prior was /maybe/ fibro - totally wrong, but it was my only lead, because I kept getting fobbed off with platitudes or "just exercise!" or with the fucking homeopathy centre for the first 3 years of agonising pain and fatigue.

Neuro diagnosed me in 15 mins.

There's a lot more when it comes to the rest of my comorbidities, but needless to say, getting doctors to even hear out my obvious medical problems has been unbearable, let alone getting a sort code. Whether I'm taxonomically valid to strangers isn't the top of my priority list.

I'm sure the Reasonable And Sceptic readers have decided that my situation is just unusual, they're not talking about me, they're talking about the strawman version where someone reads a tweet that says "wanting friends is a trauma response" and bases their life around it.

But, yknow, come on. How common is that, really? Do you have any statistics? I sure as hell don't. The community of a particular neurodivergence or whatever has undefined walls and no gatekeeping, across MANY platforms. There's no way to representatively sample it for analysis.

If you, genuinely, want to help disabled people figure out their symptoms, or straighten out some misled kids, or whatever noble goal you think you're persuing: spend that time on disability activism. Write to your representative to push them to fund the relevant healthcare.

Find out the barriers to investigation or diagnosis, see what measures can be taken to improve them, and write to every relevant power you can about it.

Don't do it once. Do it instead of browsing ableist reddits or reading "think of the children" thought pieces.

Every time you get the urge to Inform and Educate about how self-diagnosis is an oncoming calamity or stealing resources, write as many words to your local health authority, or the local government, or the national government, demanding better conditions for disabled people.

Demand that guidelines are kept up to date. Demand that GPs be mandated to learn and abide by them. Demand a better complaints system. Ask if they have public patient advocates, if they're well-resourced, why there aren't PSAs about them in every doctor's office.

There's a lot of material good you could be doing to help the problems that those with "real" diagnoses have to go through, ESPECIALLY if you're an ally.

Take those hours you spend wracking your brains over the medical history of strangers and use it to make real change.