Warning: This post is more forceful than I normally write, but I think it’s very important. I speak up now, not because I’m getting tired of being ignored (I honestly don’t care all that much), but because I’m tired of seeing my friends, who are in the boat with me, being ignored. You know who you are <3
I’ve noticed a trend at many writer conferences. While we are doing better to address race, ethnic, cultural, even sexual diversity through panels and workshops, we still have a tendency to leave out disabilities. (I’m assuming we all agree that disability is a form of diversity and on a simple Wiki definition of disability). When we do include disabilities, those represented are usually visible (think wheelchairs, amputations, cerebral palsy, ect). But there is a type disability that is just as important and should be included more in our conversations—invisible disabilities.
It’s harder to include these types of diversity. Most of the time, when we see somebody in the street, we don’t know they are struggling with severe depression or bipolar disorder or lupus or rheumatoid arthritis or even chronic pain unless they say so. Because it’s just that—invisible.
However, being invisible doesn’t make the issue any less real, doesn’t mean there’s any less of a stigma, and doesn’t mean it affects our lives any less. I want to show why those of us with invisible disabilities should still be included in the diversity conversation by sharing a snapshot of my life with chronic migraine. These are some of the things I hear (not all negative), and my responses:
“Oh, It must be so nice to stay at home all day.” I’ve heard this one more times than I can count. No, it’s not. I want to be outside doing the things I love. But if I leave my house, my pain amplifies because my brain interprets the excess stimuli as pain. Whenever I want to go anywhere, I need to weight the consequences very carefully or else ruin my chance of being able to write (or get out of bed) the following couple days.
“I wish I could sleep in however long I want and take naps whenever I want.” Well, I can’t argue with that one. Ha. But I sleep because if I don’t get the exact amount my body is needing for the day, I won’t be able to write or paint or even make dinner. This include sleeping later than my body needs. Half the time, sleeping aggravates the pain. I never know which way my body will respond until I lay down.
“Pop some Excedrin already.” No. Just, no. I responding to this one, and it bled into its own post. In short, when you’re dealing with chronic migraine, pain killers of any kind are a band-aid. Though they help you with the pain, it doesn’t solve the problem in the brain. A triptan can work if you take it in the correct form your body requires (liquid vs. nasal spray vs. pill), if you catch it at the exact moment your body needs it. And many times, a triptan still doesn’t cut it.
With my type of chronic migraine, triptans make the pain worse. Which means, the only time I can get some pain relief is by taking massive pain killers, which is not the same as migraine treatment. Narcotics and morphine help, but they still don’t get rid of the pain and it’s easy to send your body into headache rebound, making the next day worse, not including the next day’s migraine. Then you need more and more and…see how easy it is to become dependent?
This means, whenever you do take painkillers or rescue medication, you need to weigh the consequences and make sure you’re taking it at the appropriate time. Which means, most of the time, you can’t take pain killers. And even when you take pain killers, 98% of the time, the pain doesn’t go completely away because it’s still not effecting your brain chemistry and is only acting as a mask.
“You had a migraine yesterday, it should be over.” Many people think migraine Is just getting an aura and the pain afterward. Migraine comes in 4 different stages—pre-drome (which begins several days before), aura (can last anywhere from 10 min or several hours), pain (anywhere from a couple hours to several days), post-drome (usually a a couple days afterwards). A single, episodic migraine can actually affect you for an entire week (or more!) with mental slugishness, energy deficiency, moodiness, stomach problems, ect. And that’s just regular migraines. Add something like chronic migraine and your body is basically in one of these stages. All. The. Time.
“Let’s hang out!” Holy crap. I love people. But anytime I want to hang with a friend, I can’t just say yes. Many times I have to say no because of the energy toll it takes on my body. If I deplete too much energy, the migraines will spiral out of control. I know my body well enough to know I can only do about 1 external thing a week, up to 3 if it’s a great migraine week and they are little errands. I’ve lost many friends because of this.
“You’re invited to…” Let me check my calendar. I receive Botox injections every 12 weeks, so my migraines take on a 3 month cycle form. If everything else is perfect and nothing is affecting me except Botox alone, I usually have 4 good months a year, 4 bad ones, 4 so-so. Where does the event fall into the cycle? Is the traveling and stress of being else-where worth the migraine it will aggravate?
“Exercise solves everything.” Lies. (some people, yes, for me, no. Though I am happier when I can work out.) If I want to go for a walk, I have to decide what I’m willing to sacrifice that day since even short amount of exercise will trigger me and I will have to cut something off my to-do list. When the migraines are really bad, I can’t even get up a *$%^ flight of stairs without help.
“Write more!” Anytime I want to write, I ask—is this worth the pain? Usually, for me, the answer is yes. Then the follow up is, how much pain is this worth? Am I going to play a short-term game and kill myself to finish the scene and be aggravated the next 2 days? (sometimes the answer is yes, sometimes no). Am I going to play long term and do less now, but draw it out and be slower than I want to work? (sometimes yes, sometimes now).
When you look at me, you see somebody tall and confident. And I am. I love wearing shoes that shove me over 6 foot. And I’ve been told multiple times I project one of those I-know-what-I’m-doing-even-though-I’m-actually-screwed auras. You’ll often hear me laughing because I have the humor of a junior high boy and think farts and drawing penises on the church bulletin are funny.
However, I still carry all this junk Every. Single. Day. This affects me Every. Single. Day. I’ve had to completely restructure the way I live in order to have even a chance of managing chronic migraine. I’m pretty sure this qualifies as meeting even the simple Wiki definition of disability: an impairment that may be physical, cognitive, intellectual, mental, sensory, developmental, or some combination of these that results in restrictions on an individual’s ability to participate in what is considered “normal” in their everyday society.
Just because the disability is invisible doesn’t mean I, and my friends and others like me, shouldn’t be included in the diversity conversation.
A couple of my fav websites about books and diversity:
disabilityinkidlit.com—they review disabilities portrayed in children’s lit and have great articles on different types of disability.
Weneeddiversebooks.com–a great, much needed campaign
Migraine.com—great articles and community and even keeps you up to date on the newest research and treatments. Their newsletters are fantastic.