I can remember being 8 years old, telling my mom that all my bones hurt, going to multiple doctors and never having anything to explain my endless pain. A diagnosis wouldn’t change my pain; it would just give a reason for it. So, when the doctor recently told me the only thing left was fibromyalgia, at first I was excited. Finally, I had something to call it besides “pain” — a reason behind my lack of energy and difficulty writing and holding things, and hopefully people would believe me that I am in pain all day long. That excitement quickly faded.
It started with the insurance company telling me they wouldn’t cover the medication I was prescribed because they don’t have proof that it is necessary. I am not proof enough, once again.
Then, as I started talking to family and friends about it, someone said, “Oh, yeah. I forgot we made that a thing.”
After waiting and waiting for the moment where I could call it something other than pain and exhaustion, I thought people would understand. They don’t. They don’t understand the days my body says I can’t get out of bed, but my children demand it. They don’t understand how exhausting simple things like going grocery shopping are, or how painful it is to drive some days.
I’m not looking for sympathy. I’m looking for people to stop looking past my very real pain. If I tell you I can’t do something today, maybe tomorrow will be better. Just because there isn’t anything visually wrong with me doesn’t mean it isn’t there. It’s always there. It’s there every time my daughter asks me to get on the floor and play with her. It’s there every time I walk up the stairs in my house. I choose to rule my life and not let the pain of my fibromyalgia define me.
When I do want to talk about it, I don’t want to be blown off. I don’t want people to think I just have a low pain tolerance. I don’t want people to ask if I “want to trade bodies” and see how much their elbow or back hurts. This isn’t a competition. The pain doesn’t go away when I sleep, shower or sit down. It’s always there. It is real.
I just want people to understand me. Understand my pain. Understand my fibromyalgia.