July 14th is Disability Awareness Day

Earlier this week I was invited by the awesome Nichrysalis to join Spreading-Awareness as a Contributor, probably because he and I have traded comments about our thoughts on the subject of health conditions in past comment threads (like back in March when he posted his Epilepsy Awareness Day journal, or before that, when we talked about how we both had passed mile markers that suggested our conditions weren't likely to go away in the time frame we'd hoped). The point of me joining the team was to help with the various informative blogs getting posted for Disability Awareness Day.

Wuzzat?

Disability Awareness is quite simple. Educating people about disabilities and the people who have them, because just telling the world that its illegal to discriminate against the disabled isn't good enough. Disability Awareness Day specifically was started as an event by a UK non-profit that wanted to educate the people around them. It's about learning on both sides of the disability divide.

There are a lot of awareness events, some of them are days, weeks, or even months long (like Mental Health Awareness month or World AIDS Day), and for a variety of different causes. This one just happens to be about disability. I'm sure you've seen awareness ribbons for various causes before, the pink one for breast cancer is pretty famous.

... and your point is?

The stigma (and stereotypes) around disabilities and the disabled is one of the few topics I have really strong feelings about, so I'm sorry if I sound a bit preachy. The biggest trouble that disabled individuals including myself face is other people. (We're not alone in this, I'd say that pretty much any isolated group has the same trouble.) I'm still drafting the text for an article I expect I'll submit Saturday called "Explaining Chronic Illness to Healthy Folk". It might be just an intro and overview, it might be a lot longer, depending on how far I get and how well it flows together. The premise is simple; most people do not understand disabilities that are not as blatant as a wheelchair. Unfortunately for us, most people with disabilities have what are called "hidden" or "invisible" disabilities, meaning the symptoms are not that obvious. Most mood disorders fall into this category, as do many mental illnesses. Looking at us, you can't tell there's something wrong. Me, I'm overweight, but otherwise I look like a normal 26-year-old. Because of this invisibility, those of us with hidden disabilities frequently run up against the belief that we're making shit up. That it's all in our heads, or that we're exaggerating in order to get away with being lazy. Get that response enough and pretty soon we learn to read that opinion in the eyes of people we meet, whether it's spoken aloud or not. The sad thing is, after a while we start seeing it even when it's not there, and we start tearing ourselves down whether others get it or not.

My Disability

I've had chronic pain for more than ten years now, and I have been "officially" disabled and unemployed for the last three. Over these last few years I have slowly started trying to share my experiences with others, some disabled, some not, in hopes of widening the awareness of what it means to be disabled, especially with a "hidden" disability. It is that goal that led me to this journal entry.

I'm going to try and explain the primary diagnoses I've been given. Please feel free to ask questions about them, that's why I'm posting this. I don't mind discussing these, sometimes in perhaps more detail than you might want. I can't comment on how these may affect others you might know, things feel different to different people, but I'm happy to try and help you understand a friend or family member better if I can. If one person learns something from my explaining these here, I've done what I set out to do.

I have chronic daily migraines.

Just what it sounds like. Chronic, meaning lasting for a long time or repeating consistently. Daily... duh. It's the 'Migraine' part that becomes a bit trickier. If you've had a migraine before, I'm sorry, I wouldn't wish this on anyone. If you haven't, it's hard to explain because it's not just a headache. A normal headache is usually tension in the muscles. A migraine can be dully aching throughout your head (mind you, the pain feels like it's inside your head, but it isn't), a slow throbbing in one spot or several, burning, or my personal favorite the stabbed-with-a-screwdriver lance of pain.

There are a lot of things I've heard of over the last ten years that doctors think are going on during a migraine. After the third or fourth "explanation" I realized that no one really knows. They're trying to fight something they don't understand with medicines that were designed for other conditions that just happen to have an effect. They don't know why, they don't know how.

According to the Awareness ad I got when I got the "chronic migraine awareness" wristband:

• Migraines rank in the top 20 of the world's most disabling medical illnesses.
• Nearly 1 in 4 US households include someone with migraines.
• About 14 million people in the US have chronic migraines -- when attacks occur at least 15 days per month.
• Nearly half of all migraine sufferers are never diagnosed.
• More than 90% of sufferers are unable to work or function normally during their migraine.
  

I have major recurrent depressive disorder.

Mostly just called "depression". You've heard of it, everyone's heard of it. Mine stems from the fact that when my friends were going on their first dates, or going to their first wild party, I was in bed with a migraine that made me curl up in a ball in the dark. I'm not sure if I had a chemical imbalance at the time, or if it was just the reality of living with pain made me angry, but it doesn't matter now. At this point I've been on antidepressants long enough that my body couldn't produce the proper balance if it tried.

I wasn't quite fifteen when I was diagnosed. My high school sucked not because I rebelled and got in trouble, or because I didn't like my teachers, but because I spent probably three quarters of my time in too much pain to think straight. I had no social network, just the friends that I had before high school who tried to stick by me but didn't really understand what was going on in my life. I saw them at school and pretended to care, then went home to bed.

I have fibromyalgia.

Fibromyalgia is not well understood by anyone, but here's the best explanation I could find: "Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals." (Mayo Clinic) In my words, it's like bad arthritis, except the muscles instead of the joints. (That's the best comparison I could think of.)

Standard chairs with arms press into my (admittedly oversize) hips and leave what feels like bruises, though there's no darkened skin visible. I have two feather toppers on my bed so I can sleep, but even then I toss and turn, because I can't lie in the same position for too long without hurting. And I'm not talking just a few bruises worth of pain, either. I'm forced to take narcotics in order to dull the pain enough to sleep. (Some people would say, "Where's the problem? That sounds awesome." but it really isn't. I've been taking strong meds for so long now that I'm dependent upon them. Not addicted, I don't think, but it's depressing to know that your life would suck more if you didn't take the pills.

I have chronic fatigue syndrome.

Chronic fatigue is a lot like the feeling when you pull an all-nighter and then have class the next morning and a hangover, but this fatigue doesn't go away. It's hard to get out of bed if you wake up at all. Crashing at 7PM because the effort of smiling at your family and being sociable over dinner took all the energy you had. It's so overwhelming that a "good day" is getting out of bed and sitting at the computer for awhile. I'm housebound, unless a family member drives me to do errands. I live in my room and usually spend my time in bed. Fatigue is not just about sleep, it's about being tired mentally and physically all the time.

For the better part of the last year, I have been happy when I got four hours of energy in a day. Meaning I could get out of bed, sit at a computer and reply to emails, browse deviantART, check a couple forums I lurk on, and maybe, if I'm lucky, get a family member to drive me to Starbucks for a delicious drink, which I would come back home to finish but usually leave the last bit sitting on my desk because I was already back in bed. My record is sleeping for 27 and a bit hours, and if my friend hadn't come bang on my door to check on me that evening, I might've hit 30.

My Hope

I hope that this health summary will help one person, even if it's only in a small way, to find more in common with another person, and for that other to feel less alone. If I manage that, I have succeeded. The point of awareness days like this is to educate the world and connect people to one another. Here are my scraps of knowledge about disability, and my hand in friendship. You are not alone.