Fibromyalgia is one of those disabilities that changes day to day, sometimes hour to hour. One minute, I could be feeling good enough to go outside. The next, I could be stuck in bed, unable to even move. Here are five ways my fibromyalgia makes me feel guilty, even if I really have no reason to be:
1. When my friends want to go out and I just… can’t. Or when they want me to stay out with them and my body will scream at me to go home. It’s not because I don’t want to, it’s because my body and my brain just want me to sit in bed, watch “Law and Order” and do nothing for hours. In fact, I actually overexert myself sometimes in order to stay out and wind up recovering for days. I still feel guilty when my friends want me to stay out for a longer time and it’s just physically impossible for me.
2. When I use my cane. What if people don’t believe me? What if people think I’m faking it for attention? I’ve already had people stare at me for being young and whisper at me for being able to walk up a small flight of stairs with my cane (when there was no elevator around). I feel guilty using my cane because my invisible illness is just that – invisible. I don’t want people to think I’m faking, so sometimes, even when I need it, I’ll go without it.
3. When I use the elevator. Walking up stairs makes my hips burn with pain, and walking down stairs makes me feel so dizzy I fall. I still feel guilty using the elevator because sometimes I feel like there are others out there who struggle more than I do. Really, though, the worst thing you can do when you have a chronic condition like fibromyalgia is to compare yourself to others with what you perceive to be “worse” disabilities. No disability is better or worse than any other, but sometimes it’s hard to remember that.
4. When I take the bus somewhere a mile away. A mile to someone without chronic pain may just seem like a normal amount of walking. A mile to someone with chronic pain is like running a marathon. I take the bus all around my city, even if it’s only a half a mile, because the pain is too intense, and because I know if I walk too much one day, it could mean I have to stay in bed for the rest of the week.
5. When I get “fibro fog.” I work in a bar right now and sometimes I’ll forget the most basic things, like where certain glasses are located. I sometimes do things without even thinking about it first, or will stare out into space and lose focus, or will ask the same question more than once because I forgot the answer the first time around. I appreciate when people are patient with me, but it still makes me feel guilty and upset with myself.
Having fibromyalgia is a learning process for me every day. It’s a matter of learning how to live and how to fight through the pain. I struggle every day and it’s become impossible for me to imagine my life without the chronic pain. I have no reason to be ashamed of doing what makes me feel best, whether that be taking the elevator or using my cane. I have to live with this illness for the rest of my life – I need to do what makes me feel the most comfortable.