My name is Jennifer. I am 32 years old, and I am disabled.
People like me are not a dime a dozen – but we are around, more so than you know. Many disabilities are completely invisible. Take one of mine, for example: I have something called ankylosing spondylitis. (Say that five times fast.) In layman’s terms, my hip joints are fusing together, as are the vertebrae of my spine. I can walk, sure; just not for too long. Stairs I can take, as long as there are only about ten, and I have someone helping me up. The rest of the time, I’m in a wheelchair. Someday, that wheelchair will be my home. (That reminds me: find bumper sticker that says “My other car is a TARDIS” or something corny of the like, and start decorating the back of that thing.)
I remember being in high school. I thought it was Hell – who doesn’t? – but looking back… I ran, and rollerbladed (’90s alert), dreamt of being the first ice skater to skip all the prelims and land myself in the Olympics. And oh, I swam. From the minute that the community pool was opened, that’s where I was. I did backflips off of Olympic-sized high dives. I was never so happy as I was in the water, play-fighting my friends, or, well – pretending I was Ariel. (Don’t judge me; you did it too. That out-of-the-water hair flip took perfecting.)
Disability of any kind is a loss of freedom that you never even knew you had. You don’t think about the fact that you can rollerblade around your neighborhood listening to Ace of Base. (Once again, I have aged myself.) Can’t get someone to give you a ride somewhere? Eh, whatever. You’ll just walk or bike!
Facing that wheelchair means that you can no longer lie to yourself that these things are still possible. The first time I sat in mine, it was like a steel wall coming down. I am, unless science gets with it and fixes a few things, unable to do those things that made me so simply happy not so long ago. And there is nothing I can do about it.
There are always steps for grieving the loss of something. In my case, it’s mobility. Self-reliance. Friends, even. Living a pain-free life. The loss of memory due to epilepsy. I even grieve the loss of the simplistic view that my doctor knows what’s right for me; I’m such a complex case now that I’ve lost that firm belief that we have as children that the doctor is going to make you better.
Being young and female is a definite part of that problem. Have you ever heard of the story of “hysteria,” during Victorian times? We crazy women, always causing problems… the Victorian doctors came up with the catch-all diagnosis of “hysteria,” and decided that our problem was that we were the “gentle sex.” We couldn’t handle anything harder than childbearing and rearing, and keeping a house clean. Granted, we did get the vibrator out of the whole mess, but the “hysteria” diagnosis has never truly gone away. It’s just changed names. Hysteria goes by these names today:
You’re women, therefore you have a lower pain tolerance.
All you really need is a few Klonopin and a pat on the head.
Cramps can’t hurt that badly!
You’re young; you don’t need that wheelchair. You just need some exercise!
Honey, trust me. In about a few years you’re going to meet someone wonderful, and you’re going to change your mind. If I were to tie your tubes, now, where would that leave you? Motherhood is what we’re put here for!
Women are especially prone to psychosomatic (read: all in your head) illnesses. Let’s have you take heavy-duty antidepressants.
And if you do happen to become pregnant? We (the doctors) know what’s right. Here’s a miles-long list of things you can’t have, reading assignments that will scare the shit out of you, and by the way? When you do give birth, you have no choice as to where or what your comfort level will be. Because we know best.
And that’s the problem in a nutshell: Everyone knows what’s best for you – except you.
I have been in my body for 32 years now. I know its ins and outs. I know, for example, that my entire life, I have had high tolerance for any and all medications. Some people can lick a Benadryl and be out for a day. Me? Nothing. I can receive the strongest painkiller used in hospitals, and while it will make me woozy and really talkative, I will not sleep. I need multiple doses in order to not be in searing pain – and precious few ever believe me.
I am a woman, a weak little thing that does not know my own mind to the big smart (mostly male) ER doctors. I could tell them my body’s quirks, and how, no, Levsin does NOT work on me, and I’m written off. I don’t believe it’s just me, either – I believe that this is modern-day “hysteria.” Doctors announce that women just can’t take pain, or that we’re hypochondriacs. It’s the reality of being female in a male-dominated health profession.
We, as women patients, learn to suffer quietly. And so I always have, because that’s what “real women” do. We don’t fight. We’re quiet. When you’re in an ER and in massive pain and the doctor says, “I don’t believe in giving more medication than one dose,” you shut up.
This has to stop. Nobody has to be rude; but young women have got to start standing up for ourselves, as the painful knowledge sets in that nobody else will. These doctors should be challenged. “Sir, if you leave me like this, I want to know that you know that you’re intentionally leaving a patient in high levels of pain.” If that doesn’t work, call the charge nurse. Ask if there is any way of getting another doctor to see you. Call the Patient Advocates for that hospital, if you’re within business hours. And if all else fails, send letters: to the doctor, the hospital’s CEO, the head of the ER department; flood them. Make yourself heard. It’s a terrible thing to have to do, but what else is there?
The only thing I can promise you is that you are not alone. Young disabled women form a disjointed sort of sisterhood; we can’t get out without help, so we’re a bit like hermits, but we can and should find each other. I may not be able to get up the damn stairs sometimes, but if you’re disabled like me, you will find in me open arms and someone who understands you better than most.
My name is Jennifer. I am 32. I am disabled, and this is my life.