On a good day no one would be able to guess that I’m ill. I have rosy cheeks, long, thick and naturally curly red hair and long, strong natural nails. Apart from carrying a few extra pounds I am the picture of health. I may even choose not to use my walking stick for short distances. You could be forgiven for thinking I was perfectly fine from photographs of me smiling with my friends.
People with chronic pain conditions are very good at hiding behind a mask of serenity. If you look fine, people don’t question it, in my experiences people don’t question you when you don’t look fine either.
When I see myself in the mirror or in photographs I am unrecognisable from the mental image I have of myself. In my head I look frail, weak and emaciated. My bones protrude through my skin. I am pale with hollow cheeks. My hair is thin and greasy and my skin is dotted with spots.
I am a walking contradiction. I look strong but I feel weak. Regularly it feels like my legs will give way because they can no longer hold me up. I feel dizzy and faint most days and my hands shake.
I look young but I feel old. There is a reason I’ve nicknamed fibromyalgia “body of an eighty year old syndrome.” At 20 I should be the best version of myself I’ll ever be. I should be fit and energetic. I should be able to run up stairs with ease. Instead I have to crawl up each step on all fours, taking a break in the middle before hauling myself to the top where I am breathless and in pain. I should be going out with friends on the weekend, or going to university, or working full time. Instead I volunteer part time when I can, but I have to take long periods of time off. I spend all weekend in bed most weeks, recovering from the week.
I look healthy but I am sick! People don’t see the supports I wear on my back, knees, ankles and wrists, they don’t see how much medication I have to take just to get up out of bed everyday. You can’t see the pains throughout my body every minute of everyday. You don’t hear me being sick or see me crying. You can’t see the world through my eyes where every object is a hazard for pain. You can’t see all the calculations I make every day for the simplest of jobs.
Every time I get dressed I think of fibro. Every time I go out I think of fibro. Every time I sleep I think of fibro. It is constant and relentless.
Everything I do, I do with fibromyalgia in mind. So if you say “if you can’t do….how can you…” The answer is because I know my body. I know what I can and can’t do. I asses every movement for pain. So please don’t question the judgment of those who live their lives in pain. Our bodies give us a hard time everyday, we really don’t need it from anyone else.