I was filling out a questionnaire on the MS register website (I strongly recommend those who haven’t joined to sign up! Anything we can do to help) http://www.ukmsregister.org/Portal/Home
I thought I would share my response. It came quite organically to the question of “what have we not yet covered”.
Stigma, as always, is as much a problem as the condition.
I’m 25 years old and have only suffered two relapses since my diagnosis last year. As a hidden disease, the expectation of you at first glance is that of a 25 year old. When you explain you have MS, the expectation quantum leaps to that of a crippled war veteran.
People tend to think in black and white, but MS may as well be called the grey disorder. Everything that affects the sufferers happens within this zone of somewhere between normality and disability. The phrase itself “relapsing remitting MS” is misleading. In remission, we are not free from all symptoms. There are the niggling resistance to remission that keep us trapped within a label. Fatigue and concentration difficulty are the most common and almost entirely universal un-remitting symptoms. As a bus pass holder at 25, I get a lot of looks from fellow travellers looking for the defect that entitles me to free travel.
If I could, I would speak to every one of them and explain that I get £25.80 extra a week for having limited, but not severely limiting, mobility. I would also offer them the cash if they take my condition. Stigma is one of the mentally harassing side effects of the condition.
Funnily enough, after I read a post on here about someone saying how they kept being thought of as drunk, I saw a T-shirt on the MS Society website with the slogan “I’m not drunk, I have MS!” You have to make an account to order, unfortunately.
Am I the only one who would like to see some kind of recognisable symbol of MS? Like the pink ribbon for breast cancer or the daffodil for marie curie?
I know a lot of people are not ‘out’ with their MS, but I am. And as much as I shouldn’t care what people think, I do think they should be educated!