The Privilege of Health

Someone thanked me yesterday for helping to remind her about a form of privilege that goes unexamined: the privilege that comes with good health. The ability to do what you want, when you want to. Never fearing that you will face rejection or abandonment because of your not-perfect health. Being able to eat without nausea, move without pain, sleep without interruption, and trust that your brain isn't lying to you when it reflects your self-image back at you. The freedom of being believed by doctors, of not being dismissed because you're too young, too female, too hysterical. Of not being told that a stronger person wouldn't have this problem, that your imperfection must be the result of a weak constitution or poor character. The privilege of doing and being without always second-guessing yourself.

Living

I was trying to explain to someone the other day what living with chronic pain is like. How I am never not in pain. And they were all, "What, like now? You're in pain now?" And seemed so surprised, because I seemed OK. I was sitting there, talking, not flinching or moaning. But, yeah, I was in a lot of pain. Because it never goes away. Every second. Every minute. Every hour. Every day. For years. If I'm lucky, it's below a 4 on the 1 - 10 scale. I'm not normally lucky.

Someone joked with me yesterday, "Yeah, I spent the morning thinking I had Lyme, but I just woke up too early."

They didn't mean anything by it. But I wanted to fucking deck them. Lyme is not like missing out on some sleep. It's a monster that's taken away the life I wanted, ruined my marriage, stolen years of my life, left me in pain and depressed, alone and mostly friendless, and medically disabled. I live in fear of the future because I don't know what I'll be able to do when or for how long. Sometimes I question my decision to stay alive. That is my reality. That is living with pain. That is living with chronic illness.