kaberett: A drawing of a black woman holding her right hand, minus a ring finger, in front of her face. "Oh, that. I cut it  off." (molly - cut it off)
[personal profile] kaberett
(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.

(no subject)

Date: 2015-08-25 01:05 pm (UTC)
sgsabbage: (Default)
From: [personal profile] 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

(no subject)

Date: 2015-08-25 01:27 pm (UTC)
chiasmata: (Default)
From: [personal profile] chiasmata
Yes yes yes yes yes yes yes.

(no subject)

Date: 2015-08-25 02:12 pm (UTC)
From: [personal profile] khronos_keeper
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

(no subject)

Date: 2015-08-25 02:36 pm (UTC)
redsixwing: Red-winged angel staring at a distant star. (Default)
From: [personal profile] redsixwing
*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.

(no subject)

Date: 2015-08-25 03:33 pm (UTC)
sylvaine: Dark-haired person with black eyes & white pupils. (Default)
From: [personal profile] sylvaine
AMEN. May I link to this post? <3
silverhare: drawing of a woman in yellow; text: "I bring you fire" (brigid: 'i bring you fire')
From: [personal profile] silverhare
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.

(no subject)

Date: 2015-08-25 04:52 pm (UTC)
pipisafoat: a typewriter with a sheet of paper sticking out of it with a large heart on it (Default)
From: [personal profile] pipisafoat

(no subject)

Date: 2015-08-25 05:26 pm (UTC)
we: A photo of a light-skinned brunette woman with a complicated hairstyle and a flower in her hair. (Kerry - Beauty)
From: [personal profile] we
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.


So what I needed to see this morning.

Date: 2015-08-25 05:52 pm (UTC)
syntaxofthings: Fae with text "Tempestuous Fae" ([fae] Tempestuous Fae)
From: [personal profile] syntaxofthings
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.

(no subject)

Date: 2015-08-25 06:09 pm (UTC)
kriegor: (typhon)
From: [personal profile] kriegor
'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 Date: 2015-08-25 06:10 pm (UTC)

(no subject)

Date: 2015-08-26 06:03 am (UTC)
kriegor: (typhon)
From: [personal profile] kriegor
It's grimly hilarious to me that the too-often-prevailing thought around self-care and self-knowledge of that kind is so lethally bad that an antiskill like that turns out ... less anti.

You know, in an institute that's supposed to be helping you unlearn and rebuild on top of antiskills.
Edited (lord almighty i hope you aren't getting inbox pings for every one of these edits) Date: 2015-08-26 06:05 am (UTC)

*doctor dissociation club fistbump*

Date: 2015-08-26 11:20 am (UTC)
lizcommotion: A hand-drawn/colored lovely little creature with a knitted cap and piles of yarn behind it knitting a scarf (knitting creature)
From: [personal profile] lizcommotion
aha, same!

when I go to a doctor who starts dictating what my experience is (frequently the worst are the ones who un?intentionally mimic gaslighting by telling me A caused B when my B symptoms started after A, and no matter how many times I or the friend I bring along repeat that, doctor just keeps telling me that A causes B)...my reaction is usually: 1) angry tears which I cannot even in a medical setting and be "professional"; 2) dissociation and thinking about knitting patterns in my head while nodding in roughly the right places; 3) walking out mid-appointment (but unfortunately I'm still fighting about a bill for the appointment where I *could not deal* with this one doctor-person causing intense dissociation and feelz touching me and giving me an echocardiogram, and since I left midway the insurance won't cover it fun times!)

but hey, the dissociation beats actually listening to hearing the "pull your health up by your boostraps" *again*, and that way I don't have to pay for the *intense* pleasure of walking out. (though in that one case, it was totally worth it because I was shaking.)

(no subject)

Date: 2015-08-25 07:07 pm (UTC)
batdina: (emma)
From: [personal profile] batdina
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 Date: 2015-08-25 07:07 pm (UTC)

(no subject)

Date: 2015-08-25 09:09 pm (UTC)
batdina: lightning strike (bad weather)
From: [personal profile] batdina
ok. you can read NIH (US) stuff here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1994284/ and I have some other stuff I'm happy to send you once I find it on this mess of a hard drive.

the long and short for me: I had more lung capacity than anyone with regular asthma should have, with matching SHITE airways. I had both extrinsic and INtrinsic triggered asthma issues, and possibly unrelated but maybe good to know anyway: my lungs overproduced IgE so much so that ordinary delivery systems of relief couldn't penetrate into the air-sacs (this included antibiotics when I had pneumonia. that was fun -- not).

[aside on protocol that works for me: I ended up on xolair, which works well enough that I can even sometimes go outside without a mask and have done some long distance travel as well, neither of which things I could do for almost 5 full years prior to starting the xolair. I also went from needing prednisone regularly each day to having an emergency stash at home, but not using it unless a neb can't help me.]

I'm sure there was more; if I think of it I'll pass it along.

(no subject)

Date: 2015-08-25 09:39 pm (UTC)
batdina: bucky barnes the winter soldier (Default)
From: [personal profile] batdina
if you have an email I might get? I'm at choff at LMI dot net

I have a longer piece on a variety of issues vis a vis hypermobility and lung involvement that I have as a word doc only.

(no subject)

Date: 2015-09-03 02:24 am (UTC)
From: (Anonymous)
really interested in this, my lungs are a mess, I have EDS (possibly hypermobiity, possibly classical) and there was weird data in random school experiments before I ever developed anything that might be called asthma then I had swine flu, now I have some resemblance of asthma, inhaled steroids definitely help, but ventolin a lost less so probably because broncospasm is minimal but inflamation and mucus production are a problem

(no subject)

Date: 2017-02-05 11:48 pm (UTC)
alatefeline: Painting of a cat asleep on a book. (Default)
From: [personal profile] alatefeline
Super relevant to me, thank you.

(no subject)

Date: 2015-08-25 08:20 pm (UTC)
tree: a figure clothed in or emerging from bark (Default)
From: [personal profile] tree
i will stand with you.

(no subject)

Date: 2015-08-26 05:13 am (UTC)
shehasathree: (by inches)
From: [personal profile] shehasathree

(no subject)

Date: 2015-08-26 11:21 am (UTC)
lizcommotion: monarch butterfly on a branch (butterfly monarch)
From: [personal profile] lizcommotion
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.

(no subject)

Date: 2015-08-26 04:44 pm (UTC)
sashajwolf: photo of Blake with text: "reality is a dangerous concept" (Default)
From: [personal profile] sashajwolf
This, so much. Is it okay to link to this?

(no subject)

Date: 2015-08-27 12:42 pm (UTC)
sashajwolf: photo of Blake with text: "reality is a dangerous concept" (Default)
From: [personal profile] sashajwolf
I thought so, but better safe than sorry :-)

(no subject)

Date: 2015-08-26 04:52 pm (UTC)
ms_bitch_to_you: (Default)
From: [personal profile] ms_bitch_to_you
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.

(no subject)

Date: 2015-08-29 05:01 pm (UTC)
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
From: [personal profile] davidgillon
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.

(no subject)

Date: 2015-09-03 02:19 am (UTC)
From: (Anonymous)
Yup, it might be out of 9, but it really only tests 5 things and all back forth none rotational. I'm not sure if I'm lucky but I always score 8 or 9, so there is no doubt.

(no subject)

Date: 2015-09-03 02:16 am (UTC)
From: (Anonymous)
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.

(no subject)

Date: 2016-02-23 06:32 pm (UTC)
ses: (elementary - clive)
From: [personal profile] ses
I just wanted to say thank-you for writing this <3

[personal profile] 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...")

(no subject)

Date: 2017-02-05 11:44 pm (UTC)
alatefeline: Painting of a cat asleep on a book. (Default)
From: [personal profile] alatefeline
Thank you. THANK YOU.


kaberett: Overlaid Mars & Venus symbols, with Swiss Army knife tools at other positions around the central circle. (Default)

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