This is a really difficult post to write – I’m constantly being judged by others when I mention that I’m sick. I try not to go into detail over the specifics, but do when asked, genuinely. To many, I don’t appear to be sick – I don’t have the sniffles, or move around in a wheelchair, or anything of the sort. If anything, I look like any other person on the street. I have ME/FMS. I feel fatigued constantly, I have chronic pain where I can’t be touched because my nerves and my brain interpret pressure as pain, I have allergies, sleep apnoea, I have brain fog, sensitivity to light, sound, smells… and the list goes on. I’ve been told time and time again that I’m lazy, that I just need to exercise, or that it’s depression. I can’t exercise due to mitochondrial dysfunction and it’s not depression. I’m a pretty happy person, but speak to me of any person with ME/FMS who doesn’t ever feel a little depressed. I almost wish I had cancer because even if it’s not treatable, you get an incredible amount of support from anyone. There doesn’t seem to be much ME/FMS awareness and I wish there was.
I’m blessed in that I’m still able to get to university, that I can still knit, spin, craft. It could be much worse for me, and although I can do all these things, it’s not to say that it doesn’t take a lot of effort. I don’t want to give up the things that are dear to me because it’s one of the few things that make me happy. I guess one of the things that I can compare ME/FMS to is like having a dreadful case of the flu and feeling like you got hit by a mack truck – sore, stiff, achey joints, sore throat, just feeling ill and poorly and extremely tired – imagine that in your day to day life. Imagine you had the flu and had all those aches. Combine then with the feeling of a really bad sunburn where it hurts to get touched and put pressure where you are burnt. Imagine that all over your body. And then think about having to go to work, or to class, and to sit up when you just want to rest, but resting is difficult and you feel a little grouchy that you got ill in the first place, and wanting to knit, or spin, but not having the concentration levels to. Realising you’re someplace and you can’t remember why or how you got there.
Life is hard enough as it is – give support to the ones you know and love, even if they aren’t sick. Please don’t treat others how you would not like to be treated. ME/FMS sufferers all have different ways of coping. Many people don’t know what it is, and many people don’t realize how much it affects the sufferers. I understand that you mean well, giving suggestions, but believe me, many of us have tried, and have heard those suggestions many times. It’s harder coping than it looks, and I’m trying hard to live life normally. It’s a real struggle.