I have used this for many years. Definitely b do it.
This article was super long-winded so I screenshat the important part
the fact we’re responsible for getting doctors to “lower their defenses” in order to literally just do their jobs is ✨INFURIATING✨
This literally leaves me shaking in rage
Yeah, while I was actively in the throes of dying, I had to politely hedge my way around asking doctors if they thought it might be XYZ that was causing my totally weird symptoms because so-and-so told me I reminded them of their mum’s friend who had a similar problem.
If I tried to be direct or disagreed, I was politely rebuffed with the suggestion that I might benefit from “prolonged psychiatric care,” i.e., fuck off, or we’ll put you on a psyche hold. And I knew on some level I would not survive that. I just knew my time was running out, and I was still having to be polite to these fucking assholes who looked at me and saw a mad woman who’d somehow escaped her attic.
I remember the exact moment I was sitting in the hematologist’s office, politely trying to float the idea of MCAS past him by talking about it in abstracts in the desperate hope it might connect some dots for him and make him think he came up with it by himself.
And he just looked up at me, and I could see that he knew what I was doing. That I was feeding him breadcrumbs. I also saw the moment when he realized I was likely right, and he put his ego aside in favor of helping the patient in front of him. He was frank; he told me he didn’t know how to help me, but he had a former colleague who specialized in mast cell disorders, and I should talk to her.
But before that, he wanted to look at my blood more closely because he had a gut feeling and oops, look at that. I was literally hours away from organ failure because the lifelong pernicious anemia I’d been afflicted with had been misdiagnosed as a mood disorder.
I’d been living on borrowed time for so long my body had been shutting down in front of him, and I’d still dragged myself to the clinic, dressed nicely, and put makeup on because failure to do so made me a Bad Patient who didn’t take care of myself. And all the while, I was still playing fucking 4d chess with doctor’s egos because God forbid a patient know their own body and have thoughts about it.
Anyway, shout out to U of M hematology department for not being filled with egotistical cunts and saving my life ✌
We shouldn’t have to jump through these hoops, but this is the hell world we live in.
Another tactic:
(Insert made up or real doctor/specialist) suggested I ask about this, but it isn’t their specialty/they didn’t have time < how I got my tilt table test and other tests
I spent two years begging to be screened for EDS and only got screened after lying that my dad is also diagnosed with EDS. He isn’t, but he has the same symptoms as me, including random tears from regular activities, and we haven’t spoken in over a decade, so it doesn’t matter. Once I was screened, I hit 95% of the criteria and got the cardiac referrals I’ve needed for years. I have an official EDS dx and accommodations for school because I said my dad has a dx that he doesn’t.
It is FINE to lie to doctors to get testing. Don’t lie about your body or symptoms, but absolutely lie about why you want to be screened. Practice lying if it’s hard for you (I’m autistic and lying is a skill I’m bad at) and don’t feel bad lying because these people are standing between you and your wellbeing. They are standing between you and accommodations. And medications. And accessibility tools. Lie to them.
