So, here’s the thing with fibromyalgia: it’s invisible. You can’t tell how I’m feeling by looking at me. Maybe if I was someone who wore nice clothes and brushed her hair you might be able to tell. You could guess that on days when I wore yoga pants and no make-up that I was having a hard time. But because I wear the same stretched out yoga pants and one of three t-shirts every day, you’re kind of screwed.
Pain level of 9? Pony tail and no make-up.
Pain level of 2? Pony tail and no make-up.
If I’m wearing jeans and some kind of knit top with a scarf — CALL THE FANCY POLICE. I only have so many spoons and I usually choose not to spend them on clothes and make-up. (If you have no idea what I’m talking about, click here and read “The Spoon Theory“).
Because I often don’t look sick, or at least I don’t often look different, it is easy to assume I am well. It is easy to assume I am normal. It is easy to assume I am like you. Sure, I can do two errands in a row! (I usually can’t.) Yes, I can make last minute plans! (Not going to happen as I have to parcel out my energy very carefully.) Sure, I can help you lift that box/bag/suitcase/child! (Um, I’ve injured my back peeling an orange so lifting things is generally out.)
In the past year and a half, our family has been connected with a lot of new people and new opportunities. And even though I have fibromyalgia, I still want to have a life. I want to spend time with friends, volunteer, engage in meaningful work with and for others. But here’s the problem: I’m not always reliable. (And, just so you know, it KILLS me to write that.)
In my other life — my life before chronic illness – I was reliable to the point of being anal. I was always early. I never missed a meeting. My life was full of absolutes: I will be there. I will honor my commitment. I picked up the slack that other people left behind. Now I am letting other people pick up my slack. My life is full of conditions: If I don’t go to the meeting, then I will be able to get out of bed tomorrow. If I push myself to meet the deadline, then I will be too fatigued to parent after school.
Lately, I’m struggling with how to make people aware of my fibromyalgia. It’s tricky to find a balance between informing people of my limitations and coming off as using my illness as an excuse. I find this especially challenging with people I don’t know very well and am going to have limited interactions with. Like maybe we’ll work on one committee together, have a couple meetings, and then we’re done.
So, if you were volunteering with me, would you want me to be upfront from the beginning? Would you want me to inform you of my situation as things came up? Would you rather not know anything about it? (Hint: If you pick this last one, well, too bad. Keeping fibromyalgia hidden just isn’t an option for me.)
So, tell me: What would you want to know?