It's Invisible Illness Week. As in all things, I'm fashionably late. For those who are just tuning in, the invisible illnesses I live with are: Classical-type Ehlers-Danlos Syndrome and autonomic neuropathy primarily in the form of POTS (postural orthostatic tachycardia syndrome) and gastroparesis. None of this is visible from the outside, unless I happen to be using a mobility aid or wearing a brace or two (wrist or knee as of late.)
As I am reminded quite often, my illness is to some doctors just as "invisible." Meaning the damage done to my body does not reveal itself in basic blood tests and imaging which means that the ignorant comments I get from my peers, I am almost just as likely to get from my physicians. But because physicians hold a measure of power in the life of any chronically ill person, their attitudes and beliefs are far more dangerous.
Earlier this week, I filled out a form for a handicapped placard. My joints are continuing their degeneration, meaning they are laxer and thus more painful, and more likely to sublux (partially dislocate.) My hips are probably my worst joints, as I have bursitis in all four bursae.
So, after one very crowded trip to the mall to get some much needed fall clothing I'd decided I'd had enough. With my combination of degenerative joint disease and chronic low blood pressure on standing I needed to be closer to my destination. Hell, I'd love if I could just skip driving and materialize at my destination.
But since Star Trek is just a show, I decided to swallow my pride and fill out an application for a handicapped tag. To be allowed to park closer at businesses. That's all.
My doctor, who has been with me for the past six hospitalizations said, "You think you need this?"
"Yes." I said, tucking away my surprise and dismay for later.
"Does she not get it?" I later asked my mother.
It was reminiscent of my final weeks of grad school. I hadn't been able to attend class consistently in weeks and my grade was based in large part on attendance. Then I had a professor who refused to give incompletes. I was in the hospital for nine days at the end of which they basically discharged me because they couldn't stand not being able to figure out what I had.
Without an explanation from my doctors, I had none to give to my professors. One wrote me an e-mail saying how disappointed she was in me, that I would not try harder.
One lone professor took me at my word, that I was ill and not lazy or doing this all for kicks. And because of him, I have my MFA today. If he had not done the right thing, all the student loans and two and half years of grad school would have been for naught.
Having an invisible illness means always being in a situation that is ripe for misunderstanding. Not just ripe, perhaps, but bound...destined for misunderstanding.
"Well, you look great!" said the director of my program as I sat in his office after my nine days in the hospital.
"You look good!" said the gastroenterologist I saw in the hospital when I vomited continuously, every few minutes, for a full day, until only blood and bile came up.
And just before questioning my need to park in the handicapped spots, my doctor said how good I looked and how much she liked my new short hair.
The hair I had hacked off with craft scissors in my sister's bathroom. While crying and muttering to myself about how much I hated "this place."* Because my shoulders hurt so much when I tried to comb it.
I am questioned so much, particularly by my physicians that I begin to question myself. Could I simply push my way through the pain? Was I just afraid of entering the workforce during a time of economic depression? Did I somehow have an eating disorder I wasn't aware of?
And then I am thankful that I was born black and thus can clearly recognize, if not reject things others say about me that simply are not true.
I am no more imagining my pain than I imagined the man who called me the n word in undergrad. Authority and intelligence gives them no privy to what only I can know.
*'This place' being the world.