Thread by @the_pale_queen

One of the most utterly heartbreaking things I had to learn when an illness I had no idea about was destroying my life was “there’s no point going to a #GP without a fucking itemised list of goals. #chronicillness #disabled

You need to give them the service you want them to refer you to, often with an actual consultant’s name and sometimes with their secretary’s email address. And you need to phone back next week to make sure they’ve actually put the referral through. And keep phoning to chase it.

(If you, like me, are #autistic and find phone communication nightmarishly difficult, you need to suck it up because no GP seems remotely willing to communicate with patients by email).

Oh, and if what you think might help you involves a #medication that could conceivably be considered #psychoactive in any way, you need to introduce it in a way that makes them think they thought of it themselves or they’ll label you a #drugseeker.

And the issues don’t go away further up the line at the #consultant level. You* need to find out what might be helpful. *You* need to coax them into spending resources on you. You *still* need to walk the tightrope of doing that without being labelled a #drugseeker.

Oh, and if you *ever* get a diagnosis of any #mentalillness EVAR, that will be used to discredit you as a credible reporter in any way for the rest of your life, including on your own symptoms and experiences.

I am still trying to get a #POTS diagnosis after nearly 8 years of symptoms. A cardiologist when refusing me a tilt-table test: “Lots of young girls (neither, mate) think they have this trendy illness(!) when it’s really just anxiety, taking resources away from the *real* sick

people. Me: “I must be *really* anxious about going up and down then, because the only time these symptoms affect me is when I’m doing that. Especially frequently. As per my month of observations here *hands over chart*. He disregards the chart and discharges me minus test.

@threadreaderapp please unroll