kaberett | Self-diagnosis is vital and I will fuckin' fight anyone who tries to tell you otherwise

(Turns out I have at least some friends who haven't heard this particular rant of mine before, and I can't face wading through tags to see if I've had it properly already, so! Here we are. Content notes for everything you'd expect in terms of abuse, medical neglect, medical incompetence, terminal illness, etc.)

As you are probably aware if you are reading this, I have an entertaining clusterfuck of chronic illnesses and conditions, including but probably not limited to joint hypermobility syndrome, endometriosis, depression, (c-)PTSD, and autism (included here because of pathologising diagnostic pathways).

Every single one of those I self-diagnosed before being able to get a doctor to give me appropriate treatment.

I spent six years fighting for an endometriosis diagnosis, and I very rapidly lost count of the number of people (friends, family, counsellors, GPs, gynaecology registrars, ...) who outright said or strongly implied that everyone gets cramps, that I was being melodramatic, that I was doing it for the attention. It turns out my bowel is constricted and fused to my womb, I've got extensive endometrial nodules in my rectovaginal septum, my bladder is implicated, and it's starting to eat my lower-limb peripheral nerves. The average diagnostic delay from first presentation with symptoms in the UK to confirmation of disease is eight years; I got it down to 6 by strenuous self-advocacy, the support of several friends and acquaintances who had diagnoses, and being on my mother's private health insurance. Self-diagnosis was a necessary step for access to adequate treatment.

I've been sympatomatic with depression at least since I was 11; ditto PTSD (actually PTSD I was probably symptomatic by the time I was about 6). I deliberately didn't get the depression diagnosed until I was 21, because if I'd got it diagnosed before the endometriosis I'd've been told the endo was psychosomatic. I deliberately concealed my chronic severe depression from medical professionals because I knew it would make them take my physical issues less seriously - but the self-diagnosis meant I had some of the necessary tools to seek out relevant support and discussions of coping mechanisms. With PTSD the story's similar. In both cases, self-diagnosis - fitting my experiences into a diagnostic framework - let me take them seriously as problems, as disruptions to function, that I could request help and assistance and support with.

My doctors had no idea how to diagnose joint hypermobility syndrome. I had to talk them through the Beighton and Brighton criteria. Knowing what was going on let me sort out more appropriate (i.e. less damaging) physio exercises and left me better able to minimise doing myself cumulative damage. (Spoiler alert: you're not supposed to hyperextend a knee and then place all your weight through that leg.)

And again, I needed self-advocacy for the autism diagnosis. It got missed when I was a kid (as did the fact that I was behaving exactly like a child who was being abused, funnily enough, so I got punished for those behaviours outside the home instead of getting support, and I am still extremely angry about this because I've been on some of the basic training that's required for adults in caregiver roles) and made a bunch of shit harder; again, having a framework meant I could seek out resources and support and adjust my life in ways that made shit more livable for me; the formal diagnosis is in large part a formality, and is in large part useful only for interactions with bureaucracy - requests for accommodations and the like.

If I didn't engage in self-diagnosis I'd be vastly less functional and vastly more unhappy. There'd also be a significantly higher chance of me being dead, either via depression or via the part where when I end up in A&E with symptoms that are consistent with potential ovarian torsion and necrosis - for which I'm at relatively high risk, and which requires emergency surgery - the duty doctors try to tell me that I've pulled my back, because they can't cope with the idea that my abdominal physiology and nerve signalling is so fucked up by the endo that the ovarian-in-origin pain expresses far higher up my back than any ovary ought to be. (Spoilers: it was actually, in that instance, a burst ovarian cyst; but the duty gynae, when she finally got to me, was absolutely and 100% on board with the part where I had insisted through the opiate haze that I needed to see a gynae specialist instead of being sent home ~with a bad back~.) And going back a generation, it was my mother knowing that her mother had had ovarian cancer that meant she got a diagnosis while still at stage II, because she caught the symptoms of the fucker good and early and knew what they meant and insisted on appropriate investigations and treatment.

Self-diagnosis saves lives. It's frequently necessary to access appropriate treatment, because while most GPs absolutely do do their best they're overworked and, with the best will in the world, they're not going to catch everything. Anyone who tries to tell you that gatekeepers are sacrosanct and if you've not passed their arbitrary tests you're taking up space and resources that you don't deserve is so utterly self-centred and lacking in compassion that I actually cannot even with them.

You are permitted to take, and to take up, this space, and by the gods I will help you to defend it.

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sgsabbage

Thank you so much for this. It is incredibly helpful to read and makes me feel so so much better about my current situation <3

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only by balancing move

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