One of the hard parts about having a chronic illness is that some doctors are just going to fail you. And some of them are going to fail you badly, in ways that are really harmful.
I can’t remember if I’ve already mentioned this before, but the first geneticist who I saw was an absolute prick, and beyond useless. He told me I had “familial joint instability” and not Ehlers-Danlos Syndrome. I saw him because he was local, in-network for my insurance, and his office claimed he was experienced with EDS. He talked over me when I tried to ask him questions, like why he wasn’t considering my symptoms other than joint instability in making his diagnosis. He made me feel disregarded, and above all like the most important thing for him was scrambling off to his meeting he was late to. Hey, he’s the one who scheduled patients for that date and time. It’s just not right to do that when you don’t have the time to actually deal with them and talk to them about the ramifications of the diagnosis (or non-diagnosis) you’re giving them.
My GP at the time didn’t believe I had EDS. I only got the referrals to geneticists because I insisted on them and the rheumatologist said it might be possible that I had EDS. She had misremembered things, and thought that the physical appearance that is a give-away for Vascular type (but NOT present in all people with Vascular type) was present in all people with EDS. Things like narrow lips, a thin nose, and protruding eyes, none of which I have. I have fairly full lips for a white woman, a button nose, and eyes that are neither protruding nor sunken. I fought her to get the geneticist’s referrals.
After that really awful appointment, I was torn between wanting to cancel with the second (world-renowned) geneticist as a waste of time and being certain I needed to see her because she ‘got’ EDS and that first guy didn’t. I’m glad I went with the second line of thought; online communities of people with EDS gave me the confidence to go through with it, even though it was going to end up costing me about $700, when you included the travel and the high price of an appointment. She was amazing and kind and thorough, and checked all kinds of things I didn’t know were relevant, and gave me written recommendations for things my doctors at home could do to help.
The contrast between the two geneticists couldn’t be bigger, and it made me so frustrated to look back on that first appointment. The chill, the lack of empathy, the lack of time for me, the inability to answer questions…it was just horrid. It was, at that point, the worst experience I’d ever had with a doctor. I couldn’t believe how unhelpful he was. Being able to compare him to the good geneticist just made it all the clearer how awful he was. I had to talk to my fiance to get verification that he really was as bad as I remembered, because I thought that perhaps my feelings had clouded the way he actually treated me, but my fiance agreed that my version of events was right.
So what do you do about doctors like that? I mean, of course you avoid them. Maybe you even write them negative reviews (I left him a pretty scathing one on every doctor rating site I could easily find!). I thought about writing his hospital about how awful he was; I think maybe I should have, especially the scheduling issue. Because it’s just not ethical to book someone in for an appointment, have them wait months and pay for it, only to give them insufficient time to actually talk to you about what the diagnosis means and what they should do about it.
Yes, you hope to find the good doctors. At this point, the geneticist I saw who was so wonderful has a 2 year long waiting list, because she’s so good. That’s a problem in itself. And I know I am quite privileged to be in a position where I could A) push my GP into giving me the referrals I wanted, B) get a second opinion, and C) travel to a renowned specialist in my condition. But even from a place of such privilege, it’s hard to go through. I can only imagine how much harder it is for someone who isn’t a ‘good’ patient like me*, or who doesn’t have the health insurance or financial resources I have had access to.
*When I say ‘good’ patient, I mean the sort of patient that is perceived to be a good patient by medical professionals. Young, white, cis, female, well-spoken, middle-class, generally able to be medically compliant and have always had access to medical care, no tattoos, natural hair color, only basic earlobe piercings, no addiction issues, in a steady long-term relationship, etc. I know my force of personality has also helped me get the care I need, though in some cases it has taken far too long (my autoimmune issues probably should have been diagnosed years before they were, but that’s a post for another day). I think it’s really problematic that so many of these things that are beyond the patient’s control affect whether a patient is seen as a ‘good’ patient and from there what quality of care they get. I do have a few things that keep me from being an ideal patient – I’m fat, I don’t exercise ‘enough’ (though I do emphasize that I do as much as I feel I can), I’m disabled, many of my symptoms aren’t quantifiable from the outside, I take a number of daily meds including opioids, so on. I’m not a perfect patient, but I think my demeanor and ability to advocate for myself usually is sufficient, combined with my ‘good patient’ points, to get me a high standard of medical care. Other than fighting to see the geneticist, I’ve never been refused any referrals I ask for, and no one has suggested to me that my conditions are ‘all in my head’, even though many of them are hard or impossible for an observer to see. I’ve also usually gotten the treatments I have decided were necessary. I’ve rarely had my complaints brushed off.
…sheesh, I think maybe I need to write a post about the ‘good’ patient and how that’s a problem. Probably talk about privilege a bit too, because medical care is one of the sneakier ways that privilege shows up. I’ll put that on the to-do list.
