Advocacy,  Health,  Life

Invisible Illness – You look composed and Seem well.

Hey all! So I wrote this a good few weeks ago (back in a land of 2020), but with me updating my website I didn’t want to share it straight away. However now my website is live, I can share this blog with you. Enjoy and please share and leave a positive comment if you liked it!

“How can you go through all that pain and look composed?” It’s not the newest question I’ve been asked, but it’s one of the more important questions I’ve been asked when I look at my relationship with Myalgic encephalomyelitis (M.E.) which I’d like to talk about.

Having my M.E. is life-changing and this year has been horrendous enough just thinking about having to deal with this condition on its own. And don’t worry, dealing with the pandemic is another thing on top the many other things that make it worse. But this year I was a shadow of who I was. I was here but not here. I spent days in bed, if not for my depression and really low thoughts, it was because I was in so much pain that I could barely lift up my hand without the fatigue and pain rushing out of me. On those moments, my partner encourages me to talk to a family member or friend to try and distract me. But one of the first things I often hear is “You don’t look like you are going through all that pain.” I’m not sharing this as a criticism to them, because my hair did look neat and I was managing to wear my hoodie. I managed to pull a smile. Even for me, I look in the mirror and almost believe it myself until reality and pain kicks in. But again, this isn’t a criticism, but to tell you that even from my own perspective I can look “well.”

For me, I live with this invisible illness that thousands upon thousands of people live with. The other day, I managed to go to the shop with the help of my wheelchair and the support of my partner and his parents. If it were not for them, my anxiety wouldn’t let me outside. I was leaving my local Poundland where the person who worked there asked another person to move away from the exit door she was standing right in front of. The person in front of the door looked at me, shook her head and rolled her eyes. It was the first perhaps second time I was faced with a negative reaction, and that was when I was in my wheelchair. I don’t know why I had the reaction. I think about all those who use wheelchairs or a walking stick or another support to help them get around and think how often do they face these reactions.

The day before, I went to Shoe Zone to get some slippers. I was in my wheelchair but able to move my legs to try on the slippers. Does this mean I don’t need a wheelchair? Wheelchairs are for those who can’t use their legs surely? Yes, but the chairs are there for so many other people with other hidden conditions too. My wheelchair is there to make sure I can actually go out and get slippers. It means I can enjoy myself without fear of collapsing or being in agonising pain and fatigue later.

I leave you with this. We may look well, but don’t judge what you do not know or understand. I can look smart but still be in so much pain that I’m struggling to hold the tears back. I can move my legs, but with great difficulty and need the wheelchair part time support me. Just because I look well doesn’t mean I am. Not all conditions can be seen and so please consider before you judge and assume.

Today I look composed. I turned up to a meeting and chatted. I’m about to join another meeting. Today I’m in a lot of pain. Recently I had to have a 2 hour nap due to exhaustion. Tomorrow I may be able to do a lot more, or I may be stuck in bed again. I can still look composed.

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