Tuesday, January 26, 2016

Having a discussion via twitter sparked something in my head today. It might be the pain meds talking, we’ll see.

A few years ago, I wouldn’t have been on the pain meds. Despite the steady worsening of the auto-immune issues, I relied on naproxen and tylenol when things hurt…which was more and more frequently. I started with a new primary care doctor, who said, “Wait. How much are you taking? How often? Here, please go see the lab, because your poor, poor liver.”

I knew I hurt. I knew I hurt worse and worse, but I didn’t realize just how much I’d given up and pulled into a shell because of the pain until we tried some new therapies. And while the pain didn’t go away, it did get drastically better. I am incredibly lucky in my medical team, in that they listen, they hear my concerns, and try to address them.

Even so, I’m only “passing” as able bodied, in the language of the queer community, and I’m passing less and less. I don’t even bother to try in airports – flying takes it out of me in very bad ways, but for less duration than driving. I have what is called an invisible disability; unless it’s a really bad day, I try not to use assistive devices. That doesn’t mean what I can do isn’t curbed by the inability of my body to function. Also, I’m really good at concealing the braces – being a girl means I can get away with long skirts, and winter means long sleeves that come down over my knuckles.

All this means I now identify as disabled, just like I identify as female. While my life looks relatively “normal”, with job and hobbies and partner, my energy reserves are carefully allocated because so much goes towards dealing with my chronic illness and managing to function despite pain, rather than without pain. I have to make choices every morning, and every afternoon, and every evening – what needs to be done, what can I do, what can be put off until tomorrow.

I might get cranky when I am told that I’m not actually disabled or disabled “enough”. I’ve heard it from employers, coworkers, acquaintances, disability advocates, and other, more seriously disabled individuals.
No, I don’t get the same level of blatant discrimination – doors slammed in my face, slurs and derogatory language, my access to services denied because I am unable to walk in the door or converse intelligently with service providers.  I can hold down a “real job”.

I also get slammed with “but you don’t look disabled!” as I try to explain my limitations or take advantages of services I need. My language is policed and my concerns dismissed by people who should really know better, because I’m really an able-bodied person who is just playing for the sympathy.

I wish.

One of the side effects of chronic pain is depression – watching as your world narrows, frustration that your body won’t let you be normal, and the wearing, draining nature of the pain itself as it always is eating at the back of your mind, taking processing power. This is my world, and I have to fight on days like today not to let the pain define it, from waking to sleeping. I am not just a disabled person, a sick person – I am a seamstress and a jeweler and a maker of things, a realtor and a researcher, a friend and a partner.

It’s really hard to remember those other things I am, and it gets even worse when I’m told the piece I’m fighting against, that I’m struggling to not let take over my world? That piece, is illegitimate, fake, not really that bad.

Don't do that.

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