[Note: I posted this on Facebook, where I am not very “out” about my health conditions, but it bears posting here, too]
The new issue of Bitch Magazine (Feminist Response to Pop Culture) has, as its theme, Invisibility. And on page 9 is an article about a woman being dismissed as female (crazy) when it turns out that she has the exact same alphabet soup that I do, with minor differences. I have Ehlers Danlos Syndrome (EDS), POTS (Postural Orthostatic Tacycardia Syndrome) and MCAS (Mast Cell Activation Sydrome) and there are doctors that don’t even BELIEVE IN SOME OR ALL OF THAT. There’s a local doctor who says “Baloney POTS”. I guess he doesn’t have wild swings in blood pressure and a tendency to get woozy upon standing up and an intolerance to exercise (I’m not lazy, shocking, I have a genetic disorder).
When I was working, I hardly ever talked about my invisible illness. It’s extremely complicated. I let people know that I had easily damaged joints and left it at that, reminding them that our disabilities aren’t anyone’s business but ours.
I did that in part because I got tired of suggestions and talking about it all the time (I have it, I don’t need to talk about it THAT much). Had I tried X supplement? What about Apple Cider Vinegar? Did I know about this device that so-and-so is selling that really helped your friend/sister/cousin/a lady on the bus? Could I change my diet? I know it’s hard when someone you know has something that has no solution, because shit, that could happen to you too, so you better protect yourself by insisting that if they would only drink Kombucha, they’d GET WELL.
I also got tired of explaining the related conditions, alphabet soup(s) that they are, and how actually, really, there’s not much to be done about any of it, and people don’t need or want to know about how much pain I am in today, or which joint is killing me, or that my back is out, or what my digestive system (rouge pirate that it is) is up to today, or if I was up all night with my heart racing, or my anxiety, or whatever the Issue(s) Of The Day Is (are).
Also, though, is what I got all the time from doctors, which was Diagnosis Female. Female=Anxious. Female=Pain. Female. Weird. Dunno, no exciting drugs, can’t help you. I’ve been fired by plenty of docs who just say they can’t help, have I tried counseling? (And yes, I see a therapist because I have a lot to carry around and it helps to have support, but she cannot fix my genes, sorry).
It takes well over 10 years (and for many with EDS) much, much longer to be diagnosed. I was 42, (and on my path to diagnosis a doubting doctor had cheerfully dislocated my wrists to see if it could be done and they never recovered entirely from that, they’ve hurt every day since then). I was already pretty sure, having spent years researching connective tissue disorders and realizing that there was this one that I really, really didn’t want; let it be anything but THAT one, so, that’s the one. But I had to spend WAY more time working out what was wrong with me than any health care professional had done at that point, and all I had to get at that point was expensive confirmation from a nationally recognized expert. It would have been much simpler for everyone and for me to accept my diagnosis as FEMALE and get on with it.
I’m telling you this because invisibility is a theme in my life, and I’m trying to be more visible. I’m trying to occupy my space. I haven’t been entirely well in years–maybe ten at least but probably longer, I just didn’t think the whole slew of random things were one giant related thing. So, if you think something is wrong with you, it is not that you are female. It’s that you are experiencing symptoms of illness, be it a disorder (which genetic things are), a disease (which people catch) or a syndrome (um……can be caused by a disease or genetic condition). This is hard right now, since being female appears to be thought by some to be a pre-existing condition (the only pre-existing condition here is PATRIARCHY, btw), so it’s only going to get harder to make yourself visible. The payoff may even be kind of low–you have all this shit, we can’t do anything about it, have you tried yoga (try not to punch them when they ask that if you are delicate like me, you’ll only hurt yourself)? BUT. I think being visible is better, in many ways, than being invisible. Because I read this article and had to come vomit out all these words, you know? To shout out to the ether at that article, “YES! YES! OMG, EXACTLY! YES, that’s IT! IT’S ACTUALLY NOT BECAUSE OF MY VAGINA!”
We live in a world that doesn’t know that. That’s the scariest part.