Hi. I’ve had MS for 16 years. Does anyone else feel responsible for their MS and its progression? I feel I’ve not done the right things (diet, exercise, lifestyle etc). My counsellor tells me it’s not my fault and part of me knows that but there are a million different bits of advice about what you should be doing and I just want to get on with my life like a ‘normal’ person. I work full time, don’t really drink, eat pretty healthily and exercise as I can but still it gets worse. I’m in a wheelchair now and feel I’ve brought it on myself by not doing everything I should. Whenever I have tests (MRIs etc) they don’t show activity so I feel it must be me. I compare myself to other people with MS and feel theirs hasn’t progressed as much as mine so I’ve not done the right things. I fear they’re looking at me thinking this too. The rational part of me says differently as they’re lovely people but I feel ashamed of the progression.
Aw that’s terrible. It’s not your fault. MS is a sneaky, unpredictable, grumpy little b@stard if you ask me.
All you can do is what you can. I’m not exactly in the greatest shape, like you, I’m a wheelchair user. And if I wanted to I could probably blame myself for the first 10 years or so of drinking too much, smoking, going out partying and just letting the MS do it’s own thing.
But I absolutely refuse to. I’m glad I had some life before MS took away my independence, walking ability, career, body shape, choices in life.
It’s now 21+ years since MS moved uninvited into my life as a special 30th birthday present.
Everyone is different, some people have progressive MS and can still walk / stagger / use sticks, walkers or canes. Other people with relapsing remitting MS who are as disabled as me. Then there are the poor sods who are diagnosed quite quickly and who go downhill physically very fast.
We are none of us responsible for having MS. Equally, we are none of us responsible for our progression and our level,of disability. We do the best we can with the cards we are dealt.
You are very welcome here, we all try to support each other, help each other, even laugh with each other. Regardless of the fact that none of us would have chosen to be here.
I am glad that you are sharing these difficult and painful feelings on here: I bet there will be people who already feel less lonely and distressed for having read from your post that they are not the only ones to feel that way.
Please don’t beat yourself up about not always allowing your rational self to win the internal debating competition about whose fault your MS is. We’re all far less rational than we like to think, and at least you have the self-knowledge to observe what’s happening in your thought processes, even if there isn’t always much you can do about it in the moment! There’s no forcing these things, is there?
So don’t berate yourself with fact that your MS isn’t your fault and that you shouldn’t ever think otherwise. You don’t need something else to blame yourself about! Perhaps a better thing to do with the fact that your MS isn’t your fault would be to plant the idea as a consoling, non-punishing, gentle light in the back of your mind - not demanding your acknowledgement or attention - just always being there to give you quiet comfort when you need it, even on days when kindness to yourself seems hard to find.
With warm wishes from Alison
don’t beat yourself up, MS is totally random. Nothing you did or did not do in the past, no life choices you made or make have bought it on, or altered the progression.
And no one is looking at you and thinking these things! Everyones story is different.
I use a wheelchair since 2013 and you know what? When I got a motor for it, I found out I could go further and faster than I had in TEN YEARS!!!
now I have an off road chair too and that has opened up places i have NEVER been able to go! So seize the moment - there are opportunities out there.
It wouldn’t surprise me if all of us have, at some point, wondered if we’re to blame somehow. It’s an understandable thing to do, but also not really a helpful thing to do. We’ could torture ourselves constantly asking ‘what if?’. Like you, I’ve had MS for 16 years. Before diagnosis I ate fairly healthily, didn’t smoke, never got drunk, exercised lots. Yet within 18 months of diagnosis, I was a wheelchair user with little movement in my legs. My brother also got diagnosed a few years back. His lifestyle is worse than mine. But he was ten years old than I was when diagnosed, and you’d never know to look at him. I say that to show we’re all different, and there’s no rhyme or reason to how we’re each affected. So no, it’s not your fault.
But, despite us all saying that, it might not be enough to fully silence that little accusing voice. If that’s the case, it may be helpful to forgive yourself. Even though you’ve not actually done anything to cause it, at least say you forgive yourself for getting diagnosed. You might not notice any change straight away, but hopefully that will lead to you feeling more at peace.