Tag Archives: my MS is worse than your MS

Banish That Guilt

guiltEvery New Year, we’re bombarded with articles telling us how to ‘eat guilt-free’ and ‘enjoy low-fat treats without the guilt’. This comes straight after the very same publications have told us to hang the guilt, it’s Christmas.

Guilt. It’s a strange old thing. I’ve been reading through all the emails I’ve had over the last year from my blog and the one theme that comes through very strongly is guilt.

You guys have shared with me your most challenging stories, the hell of limboland, the shock of diagnosis and your fears for your families and future.

And in addition, there are often the words, ‘I feel so guilty – my MS isn’t as bad as other people’s.’ Or, ‘do I have a right to feel so devastated when I’m still relatively healthy? It makes me feel guilty.’

I feel the same. My MS was pretty bad initially but my relapses have stopped since Alemtuzumab treatment (how long for, who knows?). I felt a huge sense of guilt – it still hasn’t been approved by NICE, so I was simply in the right hospital with the right neurologist at the right time. Most of us who would benefit from this treatment don’t have access to it. At one point I thought seriously about closing the blog as I didn’t feel I now had the right to talk about MS as ‘it wasn’t as bad as other people’s’.

Let’s backtrack though. How should we deal with this guilt? Refuse all disease modifying drugs so we can truly experience MS at it’s worst? Or if our symptoms are mild, should we ignore the fact we are still living with a degenerative, incurable illness and therefore deny ourselves access to support? No. MS is not a competition (although there are people out there who think it is ).

MS is individual and our life circumstances are unique to us. MS affects us all in different ways, physically, mentally, socially. Guilt, on the whole, is an unnecessary emotion. It brings nothing positive and holds us back from moving on.

This year, I am going to banish that guilt. Instead of feeling guilty, I am going to channel my energy into campaigning and raising the profile of MS. In 2012 when I started this blog, people from 31 countries had read it. In 2013 it was 108 countries. This blog might just be a drop in the ocean, but in my own little way I hope I can make a difference.

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