I’m lucky in that I tend to research things like crazy and am extremely assertive, so advocating for myself with doctors usually isn’t hard for me.

But I’ve definitely met the medical professionals you can’t work with – the NP who told me to try tylenol when I told her vicodin wasn’t strong enough (and then moved from there to ‘try motrin’, and eventually ‘gave in’ and said she’d write me another prescription for the vicodin I’d already said wasn’t cutting it – in retrospect, I almost wish I’d thrown my hands up in defeat, because the drug she put me on, Neurontin, made my life a living hell and threw my diagnosis off for months because it gave me so many symptoms), the physiatrist (rehabilitation doctor) who told me to do an exercise for a minute, and when I said that I couldn’t even do that position, he said just 30 seconds, and when I said that was still far FAR more than I could do, he said to just do it…and I promptly subluxed the hip that HAD been getting more stable, the geneticist who decided I didn’t have EDS before he even walked into the room and wouldn’t answer any of my questions, just pausing in his lecture about why what I supposedly had was less bad than EDS (He also had the gall to tell me that becoming more flexible as I got older was nothing to complain about, when I was complaining about joints that were so flexible they hyper-extend, sublux, and dislocate regularly!)

For the record, the physiatrist is the only one I gave a second try, and that was because it was possible he was just having a head-up-his-ass day. As it turned out that his head apparently doesn’t come out of there, I fired him too.

But the rest of my doctors…they’re my doctors because they listen to what I say, and their questions are ones of wanting more information, not trying to shut me down. They also talk to me about my treatment options, and when I want to try something new, or see another specialist, they will at least talk to me about whether or not it’s a good idea!

~Kali