I’ll Call It What I Want

Why I Call My Illness M.E or M.E/CFS. This is one of those blog posts where I’m talking to you as if you were sitting with me with a mug of hot chocolate talking about something and nothing until a touchy/delicate subject comes up. I want to talk about why I tend to call M.E/CFS, plain and simple ME. It might seem like a rant but this topic is something I’ve wanted to share. How can how we define an illness shape the way it makes us feel?

I'll Call It What I Want

In the UK, most people are diagnosed with CFS rather than M.E/CFS even though they are under the same umbrella. There are many political debates over the name of Chronic Fatigue Syndrome or Myalgic Encephalomyelitis; there are many other ways to refer the same/similar illness and no right answer. I believe it is a personal choice as to how one refers to their illness/condition. No one has the right to tell you that you are wrong or that you shouldn’t. Science hasn’t told us whether in the ME/CFS bracket there are 5 conditions or they are all different mutations of the same culprit, that present differently in people.

I personally choose to call it M.E because I feel like it explains my condition more, it might not be the most common name for it but it makes me feel like there are more symptoms than ‘just being a little tired.’ Whilst CFS is self-explanatory, it doesn’t in my opinion, cover the severity and complexity of other symptoms. It doesn’t cover the pain from joints and muscles; it doesn’t explain nausea, the brain fog, the bone-aching need to sleep all the time. The list could bore you to tears so I’ll stop there. Maybe my personal aversion comes from people using the term CFS condescendingly and slightly mockingly. But it is my personal choice to call it M.E.

M.E fits the all-encompassing devastation this illness/condition has created in my world. Not one thing remains unchanged. My world has been demolished and this new world is ever jarring. I suffer greatly in my day to day life and I want a label that pays tribute to every war and every battle I take part in, day in day out for nearly a decade. I want the right to call it what best fits my existence.

I try to focus on the positive of my life and on this blog but life isn’t always polished and pretty. It can be raw, stinging and full of a multitude of emotions. There also are the happier times might I add. But just because it’s commonly referred to as CFS doesn’t mean I should follow suit.
I have some great gifts for this illness, as strange as that sounds. I got to take a detour away from the high powered, high-stress route I was taking. I got time with my family, probably too much, they might add but I have been around more than if I hadn’t got ill. I also have found the most wonderful support network and community online of people going through the same thing. I also got to really evaluate what matters to me and what I want from life.I have the opportunity to look up and see the beauty whilst facing a picture of adversity.

I could probably list ten times more bad facts from having this awful disease but if you’re reading this then you know that to some extent. I feel I have earned the right to be stubborn about this even if the medical world doesn’t really cover it. I’ll call it what I want because it’s about ME. See what I did there? I’m so proud haha. Until next week friends

Comment down below on what you would call ME/CFS and why.

3 thoughts on “I’ll Call It What I Want

  1. Fabulous post and great to spread awareness! I call mine M.E. as I find that I get taken more seriously with this ‘label’ instead of CFS. Case in point: before I knew that it was the same basic illness there was a boy in my year at school (11 years ago now) who had M.E. He was treated so well, never had to hand in assignments, got extra time etc etc. I ‘only’ had CFS (according to my teachers) so I was given no support whatsoever. I missed 20% of my final year of school through illness, but everyone thought that I was just malingering. I hated that year more than any other – I lost all my friends, who didn’t think CFS was worth the effort. Now when I tell people I have M.E. I get (slightly) more sympathy and understanding – people seem to know a little more about that name than CFS.


  2. Pingback: Hiding ME and Me | Seeing M.E In Reality

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