Sunday, February 21, 2010

Are you still in pain?

I found myself being asked this a lot this week, and uncharacteristically for me, I was annoyed by the question. Once I thought about it, I realized I really couldn't blame the people asking the question. I'm very good at hiding my discomfort; I've had a number of years of practicing the skill of hiding behind a mask of smiles and humor, and there are very few people who are able to see past that.
Before I get too into this, I want to say that I'm not saying this for pity. I want people to learn. I want those individuals with Fibromyalgia or another invisible illness or in chronic pain to realize they're not alone. I want people who are suffering and haven't been diagnosed to know they're not crazy, it's not in their head, and it's okay to advocate for themselves. I want the "normals" who have a loved one fighting fibromyalgia to gain some insight. Pity is the last thing I'm looking for. That said...
The short answer to the question is "Yes." I'm always in some level of pain. I don't know what it feels like to have a completely pain free day, or even, a pain free hour. It doesn't mean that I'm curled in the fetal position in the corner, crying my eyes out or even that I'm popping pills.
Although--there are days I'm curled in the fetal position. Fortunately, those are not frequent.
More frequent is experiencing muscle aching and tenderness. Someone touching me can hurt me. A hug can, and frequently does, hurt. The other night, a friend was making a point by touching me on the arm, and I'm sure she was being gentle, but it felt like she was poking and digging into the muscle of my arm. It's a horrible feeling, knowing that it can be so comforting to have someone touch me, but also fearing that it's going to hurt.
And if someone hits one of the "tender spots" that can help diagnose the out. Want a new skylight? Go hit one of those points on Tiffany to send her through the roof. I've had many a doc go digging for those spots (I suppose it's so that they can determine that I really have Fibromyalgia and that I'm not malingering), and I've had massage therapists try to work those spots loose by deep tissue massage (doesn't work, by the way).
So, to the normals out there who have a friend, family member, etc dealing with this: assume we're still in pain. Ask us how we are. Listen to us. Please, don't make us feel any more freakish than we already feel by treating us like an invalid. As I read recently, I have Fibromyalgia, but I am not Fibromyalgia. Inside this falling apart body that's attacking itself is a bright, funny, ambitious, fun young woman who cares deeply for the people around her. I might be in pain, but it's not going to stop me.