You Don’t Look Like You Have ME! (International Day of Persons with Disabilities (IDPD) – 3rd Dec 2022)

Hello and welcome to Believe in ME with Rhona Barton. 

This podcast is about all things Myalgic Encephalomyelitis (ME) related!

I'm Rhona and I lived with ME for almost 10 years during which time, I was bed-bound and wheelchair-bound, welcome to my Podcast.

Hello and welcome to Believe in ME with Rhona Barton. In this week’s episode I’m going to be chatting about the fact that you Don’t Look Ill. 

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Ok, let’s jump straight in!

I’ve just said you don’t look ill and, whilst that may be true for some of us, it’s not the case for everybody. Let me back up a little. 

The reason I’m talking about this today is because this weekend includes International Day of Persons with Disabilities (IDPD) and this year’s theme is Non-Visible Disabilities. I’m sure we’re all aware of the likes of Autism, Dyslexia, Anxiety, Hearing Loss plus many more conditions that are not immediately obvious just by looking at someone. But, people with ME/CFS & Long Covid can also fall into this Non-Visible disability category. And that’s why I’m talking about it.

For years, I was told that I didn’t look ill. I’m mean I’m pretty pale skinned – thanks for that goes to my Scottish heritage, but unless I was in my wheelchair or using my crutches or walking stick, people didn’t think I looked ill.

My family could tell when I had overdone things as I went from my usual pale (or peely wally as we call it in Scotland) to a grey shade with dark shadows under my eyes. And it could happen quickly! Even now, I sometimes hear a “you look grey” from close friends or family when I’m pushing myself too much!

The problem with this at the time was, unless you knew me, you wouldn’t automatically think that I was ill in any way. And that seemed to be how things went for me. If I was out in my wheelchair, and later with my crutches or walking stick, there was an outward symbol of my having some form of disability. Now, let’s not even start on people talking to my Mum instead of me because I was in my wheelchair – somehow that meant I was able to understand or respond to questions so even being out and being visible, still somehow made me invisible to some people! 

Without these ability aids, it was assumed that I was fit and well and “normal” so I would be asked why I was parking in a disabled parking bay, or why was I struggling to follow a conversation or answer a question? I didn’t look ill so how could I be ill?

This is some of the ignorance that goes with non-visible disabilities. 

But why is it called a non-visible disability? 

There’s a feeling that by using a word like “invisible” or “hidden” to describe non-visible disabilities, that the legitimacy and the impact the disability has on the individual’s...