Invisible Illness Week

This article was written for the ME Association as part of their Make ME Visible campaign during Invisible Illness Week.

During Invisible Illness Week, we think about all those illnesses that aren’t the most obvious to those around us. Depression, anxiety, fibromyalgia, Ehlers Danlos, and obviously the reason we’re all reading this: M.E. The term “invisible illness” suggests there is nothing to show for it. No clear symptom that Joe Bloggs on the street would see as such. The fact that an Invisible Illness Week even exists proves that something needs to be done to make them visible. 

I’m personally pretty fed up of that phrase “but you don’t look sick”, as if somehow not looking sick negates any symptoms underneath all of it.  

But for illnesses like M.E. what do we have to “prove” our illness? Should we even have to prove our illness to someone else? Is it not enough to simply trust a person’s description of their symptoms? 

My M.E. Story

I’m Soph and I have several invisible illnesses, the most disabling being my M.E. I didn’t used to be like this. I think all of us with M.E. could say that exact sentence: I didn’t used to be like this. I used to be a primary school teacher, active and sociable in my spare time. I walked everywhere, particularly when my little one, E, was born. She’s now 2. I’d put her in the pram and think nothing of walking to and from the local town centre a mile and a half away most days of the week. Energy was seemingly unlimited, and when it wasn’t, a good night’s sleep sorted me right out. 

Then the winter of 2018 hit. Back-to-back chest infections onto my already-asthmatic lungs created a recipe for disaster. I’ve never recovered. 

Related: My M.E. story

Over the last year, my mobility has gradually reduced, my ability to get through the most basic of activities increasingly more difficult. My powerchair is my new best friend, BFF if you will, giving me independence that I never realised I had previously been taking for granted. 

For me, the invisible nature of M.E. is my greatest bug bear, fatigue being the most invisible symptoms of them all. How do you demonstrate your levels of fatigue, short of falling asleep on the floor in the corner? How do you show that excruciating pain caused by noise and lights when you’ve overdone it that bit too much? 

Related: Why being fatigued is not the same as being tired

Using a powerchair for fatigue

My fatigue means I have to use a powered wheelchair to leave the house, or for any distance more than about 20 metres. But follow me around and you’ll see I can stand relatively easily and cover a few steps if needed. Does that make my disability any less valid than anyone else’s? No, it doesn’t.

Related: 6 things I’ve learnt since using a powerchair

I can converse in conversation, I can write (readers I’ll leave that judgement up to you), but does anyone see the increase in fatigue this causes? No, they don’t because again the illness is invisible.

Controversially, I’ve chosen not to fight it, I’ve chosen not to be constantly searching for that elusive cure. Instead my mental energy is spent on making peace with the illness. And part of that has involved making my M.E. visible to others.

So what do I do? How do I #MakeMEVisible? 

Social media: 

Anyone that follows me on Twitter (@mummyingandme) or Instagram (@mummyingme) will know that I’m a chronic oversharer. I have an overwhelming need to share what’s going on day to day, through the good, the bad and the ugly. It helps me process the rubbish that inevitably happens day to day but also share the good bits too. 

I have a history of poor mental health and I was understandably nervous about how adding M.E. to the mix would affect my mental state. But oversharing, and the support of the chronic illness community, has saved me.  

I share to everyone and anyone. Those that want to hear more follow me, those that don’t don’t. Simple as that. 

My blog www.mummyingandme.com

My blog is the way I get to share the longer pieces of writing I want to get across, without taking up hundreds of Twitter posts. I’ve always enjoyed writing. For many years, I’ve loved just grabbing a piece of paper (or my laptop in this case) and simply writing everything and anything that comes to mind. More often than not this writing is an anger-fuelled rant at the basic injustice of it all, but a few times a week I have something decent enough (again, the judgement is there for you readers) to publish onto my site.  

I like to think my blog is not only an informative place for those who want to learn more, but there for the chronic illness community as a whole. As M.E. sufferers we live in a lonely and very misunderstood world, but a world that is different to each and every one of us. If I can help share my version of life with M.E. to at least just one person out there and help at least one person feel that bit less alone then my aim will be achieved. 

I feel it’s my responsibility to help #makeMEvisible. Until someone tells me basically to bugger off, I’ll continue spreading the word via my blog and social media. 

So far, feedback has been overwhelmingly positive, and maybe in time, my writing will help Joe Bloggs on the street see it doesn’t need the more obvious symptoms to make an illness more valid than others. 

Over to you readers: how do you make your M.E. visible? From writing, photos, to social media, what are your go-tos to help spread the word? Go to social media, use the hashtag #makeMEvisible and share what you do to help our illness more visible to others. 

One thought on “Invisible Illness Week”

  1. OMG, you sound like you just read my mind. I have some slight differences in my condition (I have Fibromyalgia, ME & a shopping list of other things< but I am also a chronic oversharer and I really find it helps me too! Some friends have said to me I ought to blog about my life, but I haven't had the confidence. I do vlog on YouTube though. If you want to have a look, you can find my channel by searching BeckeyBarton

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