I’m sure nobody is surprised to hear I have a complicated relationship with doctors and nurses. Doctors are authority figures in our culture, and one of my earlier medical memories (not related to EDS!) was having planter warts removed from the bottom of my feet when I was a little kid. All I remember is screaming and trying to get off the exam table, and my dad sitting on my legs so they could freeze the warts off with liquid nitrogen. Not a great start to my encounters with medicine!

I really don’t know what medical school education is like, so it’s hard for me to contextualize what doctors say and do. It’s not exactly true that they never believe me, it’s more just that they haven’t made more than superficial effort to help me. When I report fatigue they order a thyroid test and then message me that my labs are normal. No followup, no investigating anything else. When I report heart palpitations, bounding pulse, and chest pain, they tell me to drink less coffee (that was at two cups per day—going to one made no difference). No followup. 

I got to the point where I just stopped reporting most of my symptoms. The symptoms don’t seem to be life threatening, so I just add it to the list of crap I deal with. A few years ago I had a breast reduction and had excruciating nerve pain afterwards. A friend finally convinced me to see the surgeon again this winter, and he was horrified that I’d not even bothered reporting it to him. I just shrugged and said it was part of all the other stuff I put up with and it never occurred to me to tell him about it.

I also know that our health care system has some perverse financial pressure: we have for-profit health care and for-profit health insurance, and both of these put a lot of pressure on medical professionals. Visits are very short, and there just isn’t time to deal with a complicated condition like mine, especially since it doesn’t show up on routine labs. I know that working within that kind of system can really wear on doctors, and that people in helping professions often have compassion fatigue. So I get that it’s really complicated.

On top of all that, I tend to be very literal and I find my conversations with doctors and nurses often go very far off the mark very quickly because I answer too literally and then we somehow get a mile down a side road because I just kept answering the next thing they asked me, and none of it has anything to do with what I wanted to talk about. Sometimes, when I feel brave, I *ignore* whatever they ask me and say “can I just talk for 3 minutes?” That way I can explain what’s going on and what my priority is, and then we can start the back-and-forth. Some people aren’t as receptive to this, but again this is where having my diagnosis is such a game-changer. Now I know they might not know about EDS, and that I’m going to need to explain a bit to them and I feel I have a right to take up 5 minutes of the appointment doing that.

I feel like I’ve gone from appearing as a “dr. Google said” hypochondriac to appearing as “I have a rare condition; let me give you the highlights and then we’ll go from there”. It’s hard, because I never want to be “that patient”, who comes in with a long list of random stuff I read about on google that I’m worried I have, and I’ve spent my whole life trying to convince doctor’s I’m not just a lonely hypochondriac. I think this is why I often just don’t go see them at all.

There’s a complicated dynamic between medicine and white women in the US. And there’s an incredibly complicated dynamic between medicine and black people in the US. I know doctors are human, but I think we can do better. I think we can educate them better in medical school, and I think we can do better research that actually includes women, and doesn’t actively harm black people (https://www.scientificamerican.com/article/how-to-take-racial-bias-out-of-kidney-tests/, https://www.nytimes.com/2020/12/23/well/live/pulse-oximeter-black.html )

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