Inspiring stories from people with ME/CFS

I thought it might be useful to compile a list of inspiring, interesting or notable people with ME/CFS who despite their illness were still able to achieve a lot. In most cases their health seemed to have improved as with (severe) ME/CFS it is nearly impossible to achieve notable things.

The most known example is probably Laura Hillenbrand who wrote best selling books such as Unbroken en Seabiscuit that were turned into Hollywood movies. She has been outspoken about having ME/CFS, for example here.

 

Recently I also noticed that others had success on YouTube.

Vlad Vexler has more than 100.000 subscribers for his channel where he talks about Russian politics and philosophy. He has also made video's where he discusses what it is like having ME/CFS: Vlad's ME Diary - YouTube

 

Ren Grill, the musician who was in Unrest know also seem to have a successful YouTube channel with over 1 million subscribers.
https://www.youtube.com/channel/UCqq3VcwPGseErHUa0-xLInQ

 

There's also Stuart Murdoch of the Scottish band, Belle and Sebastian.

I hesitated a moment before contributing, in case focusing on people who've achieved a lot just rams home for some members how much of their potential ME has destroyed. It's also easy to forget how much people's success may depend on luck, a liveable income, and being able to focus energy on work because they can access support with household stuff.

Maybe I'm wrong, though, and we need some inspiration! We certainly need informed voices with a platform.

 

I have very mixed feelings about mainstream coverage of disability and disabled people which centres on inspirational achievements. It’s as if there are “good disableds”* who overcome adversity and hop up and down mountains on their prostheses, for charity, and “bad disableds” who stay at home and mope and claim benefits.

It’s a bit like the mainstream and employment commentary which claims that autism is a superpower. Positivity and uplifting inspiroporn are not acceptance.

* Debt to Chris Morris and “good AIDs v bad AIDS duly acknowledged.

 

Well said, and largely agree.

I have been ill for a long time and it is becoming more and more difficult to imagine that I will be fully healthy again one day. So hearing about other ME/CFS patients who have not recovered but only improved a bit and then were able to make something interesting or noteworthy helps to keep hope. It keeps the future open, suggesting that a lot is possible even if you were to remain ill.

 

Personally, I don't find these kinds of lists useful. What I have found useful in dealing with my own illness is rather than focus on what rare, exceptional or just plain lucky people are able to achieve is to focus on achieving as much as I can with the limitations that I have, and feeling pride in that, and admiring people who do the same. In the past, comparing myself to people who might be said to have achieved "a lot" invariably made me feel like a failure, and thankfully I realised in time that it wasn't a healthy (haha, pun unintended) thing to do.

 

Yes these things are not always mentioned but they play a very big role.

Behind my very small success stories with walking/swimming is also the fact that I live with my parents who do most of the household work. If I had to spend more energy on these things I would have much less, if any, left for these physical activities.

 

it's Ren Gill
thread here
Members only - Ren - British musician | Science for ME (s4me.info)

see also tag 'jessica taylor-bearman'
one of the threads A Girl Behind Dark Glasses - Jessica Taylor-Bearman | Science for ME (s4me.info)

thread with similar theme to this one
Members only - Chance of improvement for severe patients | Science for ME (s4me.info)