What I wish people knew about CFS/ME

I wouldn’t wish this illness on my worst enemy, but sometimes I wish people understood what it was like to suffer with CFS/ME. I thought I would talk about some of the things I’d like people to know.

It’s not a choice

I know it may sound obvious, but I think it’s easy for people to just think I’m being lazy or emotional when actually whatever is happening in my body is for more complicated. Believe me, if I had the choice between spending all day lying down or being able to get through the day without stopping to rest, I know what I’d pick. Even when it’s a joke it still stings if someone calls me lazy, it’s not like I have an option.

The FOMO is gutting

It’s a cliche but honestly the fear of missing out can be a horrible part of this illness. There’s nothing worse than watching your friends be able to do whatever they want whilst you’re so restricted by an unpredictable illness.

I don’t want sympathy

I understand this illness is pretty rubbish, there’s no sugar coating it, there’s nothing fun about being chronically ill. However I’ve never needed people to feel sorry for me, all I would ask is for their support.

Ask me questions

When I first suffered from CFS/ME there was a lot I didn’t understand about the illness, it’s obvious that people who have never heard of it are going to struggle to wrap their heads around it. The best thing is to just ask me any questions you have, or go search online, the better you understand the easier it will be to help.

This is a serious illness

Although it’s not always obvious, this illness has literally changed my life. In the past year I’ve had to completely change my career plan, the way I live, my diet, my social life and keep a positive mindset. It’s not just feeling tired, my body has so many symptoms that I’m still discovering today – a fun new one that has emerged – my jaw clicks and locks like there’s no tomorrow when I’m tired.

I’m very good at hiding my fatigue

It’s a talent I’ve accidentally mastered, I think it’s an automatic response to just put a guard up, pretending I am feeling okay rather than admitted how ill I actually do feel. Don’t get me wrong, there are times I can’t hide the fatigue, however majority of the time I’m feeling a lot worse than I’m showing.

See you next time pals x

Author: Ells Jayne

A 21 year old suffering from CFS/ME whilst studying at university in Brighton. Follow my story as I write about living with an invisible illness whilst studying and trying to launch a career.

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