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Asher Wolf @Asher_Wolf
, 27 tweets, 11 min read Read on Twitter
I spent 20 years with both chronic and acute pain. My right hip and shoulder dislocate on a daily basis. I have a dozen comorbidities. I was told it was my weight, anxiety or all in my head. It was undiagnosed Ehlers-Danlos Syndrome. #DoctorsAreDickheads
I had doctors say maybe I was just a little sensitive or maybe I was just lazy. #EhlersDanlos #DoctorsAreDickheads
I developed Raynaud's Syndrome and peripheral neuropathy and Central Sensitisation Syndrome as a result of undiagnosed and untreated EDS. My doctor called me a malingerer. #DoctorsAreDickheads
My skin kept breaking and I kept getting staph infections. It was suggested I take more baths and improve my diet: I showered every day and ate sugar and gluten free with a full range of veg and fruit. My skin was fragile because of EDS. #DoctorsAreDickheads #EhlersDanlos
I was told my weight was my fault. No doctors mentioned movement avoidance because of chronic pain or lipedema or metabolic resistance. I went on starvation diets. #DoctorsAreDickheads #EhlersDanlos
I missed out on work because I was constantly ill. I gave up postgrad dreams. Docs told me it was normal for women to have huge pain every month and massive bleeding. It wasn't. It was menhorraghia and acute pain due to luteal-phase joint laxity due to EDS. #DoctorsAreDickheads
I couldn't stand up properly. When I walked I looked like I was drunk. I felt dizzy all the time. A doctor told me I needed a better attitude. I had Postural Orthostatic Tachycardia - a common EDS comorbidity - and proprioception issues. #DoctorsAreDickheads
It hurts to walk. Doctors told me to exercise more. Once I got diagnosed with EDS an exercise physiologist pointed out my legs were significantly different lengths, bowed and pigeon-toed and that I was dislocating at the hip with every stride. #DoctorsAreDickheads
I had bad reactions to meds. A doc told me to stop being stupid and over reacting. Turns out lots of ppl with EDS can't tolerate SSRIs & opiates. I tried to take the meds they prescribed and titrated upwards - spent a month and a half shivering on the couch. #DoctorsAreDickheads
I passed out in the street. Someone called an ambulance. Doctor: "oh not her again, fast track her out." A friend flew interstate to advocate for me. Doctors talked to him and pretended I wasn't in the room. #DoctorsAreDickheads
I got left on a triage floor for hours. A guy with a groin pull got wheeled in before me. I'd had undiagnosed EDS all my life, in chronic pain for two decades at that point. It took a politician to turn up at ER for me to be admitted to ER. #DoctorsAreDickheads
I crowdsourced a diagnosis suspicion online and *then tried to get assessment referrals* My GP said she didn't like her patients diagnosing themselves. She refused to do referrals. She refused to consider EDS as a diagnosis. I had undiagnosed EDS. #DoctorsAreDickheads
Changed GPs. New GP discovered ASD is an EDS comorbidity & got fixated on diagnosing ASD rather than treating the acute and chronic EDS-related pain urgently first. I had to bring a lawyer to the last appointment to extricate the medical referrals. #DoctorsAreDickheads
New GP looked at referrals and pointed out last GP hadn't properly filled them out. Which was why I was bumped down the waiting list for important referrals. #DoctorsAreDickheads #EhlersDanlos
GP set a complex care plan that required me to seek genetic testing in the public system. I waited for months to get testing. Hospital took my referral, billed Medicare, took my history, then told me they don't genetically test anyone for EDS. #DoctorsAreDickheads
Called a different public hospital about genetic testing. They only genetically test suspected EDS patients when they think it might be a new EDS mutation. #DoctorsAreDickheads
I have some major and minor symptoms of Vascular EDS, which has a poor prognosis. I have Ashkenazi heritage, so it could be Dermatospraxis EDS. Won't know without genetic testing. But docs aren't supplying access in the public system to EDS genetic testing. #DoctorsAreDickheads
For now we're working on the theory it's Hypermobile EDS. I keep getting chucked on waiting lists to doctors who've barely heard of EDS before, who then say it's "rare", almost as an excuse for never having heard of EDS before. hEDS affects one in 5000 ppl. #DoctorsAreDickheads
Somewhere along the way so many doctors have decided EDS patients are someone else's problem. A GP's problem. An ER's problem. A specialist's problem. Doctors who've decided the problem with diagnosing & treating EDS makes the patient a problem. #DoctorsAreDickheads
EDS patients have complex, multisystemic issues. GPs aren't trained about EDS. ERs can't even spot EDS when a patient presents every three months for twenty years. And public hospital specialist clinics like rheumatology have 6-18 month waitlists. #DoctorsAreDickheads
I finally got to see a rheumatologist. Because someone on Twitter asked their dad, a professor, to see me as a patient asap. I got formally diagnosed with hEDS as a result. The public health system would have left me in acute pain for another 18 months. #DoctorsAreDickheads
I'm going to keep making Ehlers-Danlos an issue until public patients are given clear diagnostic and treatment pathways. No more 20 year diagnostic wait lag, with zero official treatment paths. You can't just leave patients for dead. It's not ok. #DoctorsAreDickheads
You can read about my experience of hospital patient liaison services setting up a meeting btwn me and the reps of medical and nursing staff that failed to diagnose me with Ehlers-Danlos Syndrome here: #DoctorsAreDickheads
Oh and since we're talking dickhead doctors: my ex-GP assumed I was in menopause. In my mid 30's. Without testing me. And put me on supplements for menopausal women. Took six months after sacking her to find out she was wrong. #DoctorsAreDickheads
If you're a doctor and you're deeply offended by the #DoctorsAreDickheads hashtag: good. You should be. I'm living with chronic and acute pain due to genetic Ehlers-Danlos Syndrome that went undiagnosed for over 20 years. Go ask your colleagues why they can't diagnose EDS
And if you're trying to work out where the #DoctorsAreDickheads hashtag came from: it started with Ehlers-Danlos Syndrome patients on Twitter who are furious about the horrible way they're treated by doctors far too often
And if you don't get it, if you don't get why women with EDS think #DoctorsAreDickheads: good for you, you live a charmed life
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