Forum

Stigma

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.

http://oscos2.bmc-ics.com/mss2/public/

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!

I think the symbol the ms society use is a broken M next to an s.

Whenever ms is mentioned, I often hear ’ oh yes, it comes and then disappears, doesn’t it?, ’

I know, makes you wanna scream!

Love pollx

I’ve got to be honest, I’ve never had anyone claim it disappears.

I’ve had reactions ranging from: “Oh, that’s that yuppie thing, isn’t it?”, to: “How long have you got?”. Talk about sublime to ridiculous.

No, it’s not a middle-class affectation, and no, it’s not terminal either - usually!

Tina

x

I think people get MS and ME (aka ‘yuppie flu’) mixed up. I usually say I have Multiple Sclerosis, rather than MS, to avoid confusion. I have not noticed any stigma, but I think I don’t have very good antennae for these things.

Funny you should say that Sewingchick, I saw someone yesterday from one of the other ‘branches’ where I work and I was asked how I was etc, etc (they knew something wrong), poor guy had been told I had ME and was mortified when I told him I had MS (he has a relative with MS so well knows the difference), at least I know wherever the ME thing came from it will now be rectified.

Hear hear. Had someone mix-up the MS thing with ME only the other day.

Louise

I’ve never really worried what people think of me and certainly wouldn’t get upset by a look or passing comment by a stranger. The disease is enough to contend with!

Paternalism on the other hand gets my goat every time and I do make my feelings known about that.

1 Like

Hiya

I would be happy to wear the slogan you mention on the T-shirt on a well designed brooch. I’m all for educating people about ms.

Personally, I don’t do T-shirts with writing on but a brooch I would be happy to wear on my jacket

X

hiya

oh-this is nothing to do with a problem with your eyes…

i was in mid 30’s when diagnosed. 10 years later i am using a powerchair and have carers to help me with basic stuff.

i understand ur enthusiasm and wanting to raise awareness but…

ms is a very lonely isolating illness if u let it be. i say that cos even us on here dont know what you are feeling/experiencing. of course there are similarities but as we all cope uniquely then only you actually know exactly how you are coping/feeling.

i believe the key to coping with this ms malarkey is keeping your mind strong no matter what ur carcass is throwing at you. that is easier said than done-i know!

folk are mainly interested in any illness/disease if they are themselves or someone close is subjected to it-which is understandable. ms is such a unique variable disease there is no way that joe public can even begin to understand!

so may i suggest that instead of trying to change/educate the whole world then you change the only person that you can-you!

before i am lynched let me try to explain! your time and energy is precious so use it wisely. banging on about ms all the time will be destructive for you-especially mentally. yes its a part of your life but so is work, friends, family, socialising, eating, reading blah blah blah-dont give it more time than it deserves!

i personally dislike the term fighting ms. why? because ms is now a part of me, albeit an uninvited guest but why would i fight myself?!

i talk about my ms in a similar way to my kids and my hobbies etc-almost ‘matter of fact’ i guess but thats not because i am in any sort of denial-far from it! there is alot more to me than the label that someone else has given me!

i appreciate that you may have read this thinking ‘what the heck is she waffling about?!’ i totally understand but i am just trying to give u a long term suggestion in how to cope-your ms is her to stay…

be happy, ellie

6 Likes

well said, ellie!

pollx

yes some excellent replies. I brought it up on this site before and am now in possession of orange wristband from the Ms society + bue wristband from Ms trust. It makes me feel better to wear them considering the amount of stupid mistakes I make in every day life: like going into shops with no idea why I have come, having great difficulty in giving the right change for a cup of coffee, not recognising my neighbour…the list goes on+ on…Thank you Ms society+ Ms trust!

Well said Ellie.

I agree with you but it has taken me a while to come round to that way of thinking.

MS is part of my life ‘for better or worse’ but I haven’t always seen it like that.

Anne x