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

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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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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

Yes yes yes yes yes yes yes.

Thank you thank you thank you thank you

and one more time: thank you.

You have no idea how much you taking the time to express your experience has meant to me. You have no idea how much it makes me feel so much less alone. No, really, because i have been going through a massively tough time and really been backsliding on self advocacy, because hahahah fuck the US health system.

Thank you. Thank you for believing in yourself, and having the strength to loan your courage to others. <3

*wild applause*

Thank you - this was good to read, today.

It took me 10 years to get intervention for endo, for all the same reasons.

AMEN. May I link to this post? <3

Yess. After years of being patronised and head-patted and 'oh well but you are female and over-reacting' I went to a new doctor with a long list of symptoms and the diagnoses and he said, "Yep," and put me on the right meds.

The first GP I went to see about my autism said, "That's what nine year old boys have."

....!

I don't really trust or like doctors, sadly.

♥

I agree - thank you so much for this post. Self-diagnosis often the first step towards an official diagnosis, especially when you can recognise your own symptoms, and can use coping skills to try and work round the difficulties if you haven't got access to a diagnosis, whether it's because your GP doesn't listen to you or you'll be on a long waiting list to get care or you live in a country/region without universal health care *cough US cough* and can't afford treatment. Most of our diagnoses are not self-diagnoses but we are fairly sure we've got OCD, even though we haven't got an official diagnosis yet, but we've been struggling with the idea of using the OCD label without an official diagnosis.

You're right; it's about having a framework.

~K.

This is incredibly well-timed for me. As of yesterday I began thinking of investigating autism, how it works, how people cope, and whether I should bring a list of symptoms to my GP to begin discussions about whether it applies to me. Still, I've been fighting massive impostor syndrome about it: can't be me, someone would have caught it, it's not like I had special needs as a kid, I'm able to manage my life, etc etc.

But really if that's something that helps me manage my life BETTER, how wonderful would that be? And it would make things make sense. But ~noooo it isn't you, Stephanie!~ Ahem. I really really appreciate this post, even more because you are a person with diagnosed chronic illnesses making it.

'sfunny - 'I know you better than you know yourself, now shut up and let me dictate it to you' is more or less a flashback trigger for me. It should probably not turn out that a trigger should be /useful/, but it's kept me from ever fully internalizing the idea that I can't know what's going on with myself, even in some of my worst uselessness spirals.

And even when I've been wrong-- which has happened. It actually helps me skip to 'so what? you learned something' which I have a harder time doing on other topics. Much harder.

Thanks for ranting.

Edited 2015-08-25 18:10 (UTC)

I knew I had EDS/HMS for at least 20 years before I could get anyone to do anything for me that wasn't an NSAID (very useful for those aches and pains that are NOT about inflammation!). Oddity in my case was that it was a pulmonologist who finally agreed with me because "people with ordinary [connective] tissues don't present like the asthma with which you are presenting". Took the rheumi about five more years to get on board enough to sign disability paperwork.

I keep hoping the medical community will stop being stupid, but I doubt my hopes will ever be realized.

(Also? Don't get me started on ovary issues or we're likely to be here all fucking day long.)

ETA: to fix stupid typo

Edited 2015-08-25 19:07 (UTC)

i will stand with you.

*waves*

thank you thank you for posting this.

i've been ignoring a bunch of my health shit lately because of "inability to deal with another doctor telling me that I am making shit up for attention", but my body is yelling at me with increasing insistence at the moment so urgh just gonna suck it up and self-advocate I guess.

This, so much. Is it okay to link to this?

Thank you! Thank You! THANK YOU! This is an excellent post! People don't seem to realize that doctors work for them, that they deserve to get good service. I've had to advocate for myself and my mother. It can be scary and stressful, but sometimes it's necessary.

I hope you don't mind that I've shared it.

Belated abso-fucking-lutely!

I've had a rheumie perform the Beighton test (which is a poor match for my presentation) and score it wrongly, then write a devastating report to Evil Aerospace on that basis. Took me two years, and absolute belief in my HMS diagnosis, to convince them I would shred them in court if they tried to use it against me.

Self diagnosis is sadly vital, medicine has moves so much in the past 50 years or so that doctors are more inclined to treat even if incorrectly rather than have no treatment for whatever the problem is, there was a point in time when knowing it was endometriosis didn't change anything because there was nothing better than usual help. What seems to get forgotten is that without diagnosis then there never will be treatment. I don't know any history of endometriosis, but it must have taken someone or some group noticing a bunch of women had something that was worse and correlated with other stuff.

An online acquaintence was once sent home from the emergency room with an ectopic pregnancy, it was very early, but with the info she gave I was able to determine that it had not been excluded when the hospital said it had, that probably saved her life and her tube.

I just wanted to say thank-you for writing this <3

ewt reminded me this was here today as I was fretting about self-diagnosis.

(Long story short: I am working on better self-care/management, and I've been having a lot of moments over the past few month while doing research/talking with people about ASD going "OK this is incredibly familiar...")

Thank you. THANK YOU.

stumbled across this old post (linked in a tagged post) while looking back because I didn't remember any details about the leaky vacuum. and it's like... I agree in general but reflexively go "can't apply that to me"

I'm actually in the process rn of reading The Body Keeps The Score (and progress is trying because it turns out that descriptions of trauma and trauma response evoke in me what's almost certainly a sympathetic nervous system response, which is emotionally un-fun/unbalancing and kinda muddles my brain) and I actually keep doubting—despite all his reassurances that (more or less) diagnoses~= biased models and any good treatment involves listening to what the patients have to say—whether this ought to be applicable to me...even though I'd judge my physical response means yes. :P

...ironically this is definitely shaped in my head by how certain medical things proceeded with my dad* which I'd venture to say has something to do with how I really think he only ever substantially got the medicine aspect of van der Kolk's tri-pronged talk therapy, medicine, and ~body-trauma mending treatment model.

*will probably say more in a locked post rather than a comment on someone else's public one

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