Just out of interest and because I’ve been bored in work recently (sorry, boss), I’ve been asking people what MS conjures up in their minds.
My random and unscientific survey threw up some depressing results; according to my motley panel of vox-poppers, MS is:
- An older person’s illness
- An illness that means you have to give up work as soon as you’re diagnosed
- An illness with no treatment
- An illness that will propel you into a wheelchair soon after diagnosis
- An illness that absolutely everyone has a story about, normally, ‘oh my auntie/great-grandad/batty neighbour had that, dreadful it was. How they suffered’ (sad face)
It seems MS has a serious image problem.
When I tell them MS is the most common neurological illness in young people and is generally diagnosed between the ages of 20 and 40, they’re astounded and/or disbelieving.
So what’s going on? Is it that we’ve made astonishing progress over the last 30 years, but the image remains the same? Take my dad for example. He was diagnosed at the age of 28 and died at 35 in 1978 from complications arising from his MS. There was no treatment and he was sent home with a walking stick and back then, MS was even referred to as ‘creeping paralysis’.
Five years later, in 1983, the MS Society gave a £1 million research grant for the purchase of the first MRI scanner in the world to be solely dedicated to MS research, changing the way MS is diagnosed.
A decade later, in 1993, the first three MS specialist nursing posts were created. Today, there are 270 MS nurses in the UK. In the same year, interferon beta-1b was the first drug to ever be approved for the treatment of MS. There are currently 10 licensed disease modifying drugs and 8 more are in the pipeline.
Is it simply that MS is mostly an ‘invisible’ illness, only making itself apparent to everyone else at it’s more serious stages? What is the true picture of MS? Is it time to re-brand MS?
MS is an invisible disease until suddenly you are obviously disabled. By this I mean using a rollator or wheelchair or a disability scooter.
Quite simply people do not know what goes on behind the front door of an MS sufferer. The same applies for someone suffering from diabetes or lupus. Suddenly you have changed from being healthy to being disabled, from being useful to being a liability.
People need to be made more aware of MS, what it means to have the disease, how it affects you, your family and employment. Also people need to know treatments that are available.
Excuse my cynicsm but I think rebranding is making more people aware. People who know about multiple sclerosis need to stand up and talk about the disease to employers, students, strangers, friends and relations. In other words increase awareness and make people less frightened of the disease.
I am trying to make more people aware of MS. I stand up, wobble about, and give talks about MS. Any takers? call me on 07947 024691
HI!
I don’t think you’re being cynical at all – by rebranding we make people more aware. And yes, all of us who live with and get on with a life with MS need to stand up and be heard. I don’t mean jumping out of planes or scaling Everest, just everyday things like being successful at work, being a great parent, etc.
You’re right. People are often afraid of MS and I think it harks back to the bad old days when there was no treatment whatsoever.
You’re doing a great job Patrick!
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I do think the big image problem is because MS is an invisible illness, so either people think you are faking it or when, or if you do get really bad, that is the image people have in their head of MS. The public is not very well informed about MS, partly because they don’t deal with it personally, and partly because they do believe everything they read about it that they shouldn’t (example, the diet coke thing). For some reason it bugs me when people start saying, “oh, I knew a person with MS, my best friends dad’s uncle etc” Most of the time they just focus on the negative and third hand info :/
another thing I have noticed is that some, not all people with MS just don’t talk about MS. And thats a very personal choice what a person shares about themselves, but there needs to be people with MS that are more vocal about it, so that unaffected people see that there is a range of people effected with MS. I don’t go around shouting from the rooftops I have MS, but I am not shy about sharing it if needed or people start looking at me funny when I walk or park in a disabled space. People need to realize that you don’t need a wheelchair to be disabled. Actually thats also part of the problem. People mostly associate disability with wheelchairs when its roughly only 10% of disabled people in wheelchairs.
a “re-branding” would be a good idea, but it probably would take awhile to change people’s minds about what MS is :/
only 270 MS nurses?!? thats not enough. makes me glad I have 2 that I can get in contact with if needed.
ok, done rambling :p
I LOVE your comments – and totally agree. I do think it’s mostly the ‘invisibility’ of MS and the fact that most people are only aware of it when they know someone with MS in a wheelchair. MS has a really bad press and needs a PR stunt (or something) to bring it bang up to date. Let’s highlight the great strides that have been made in the last three decades! MS is no longer being written off as one of those things we can’t do anything about.
I’m not shy when it comes to talking about MS and I love it when people want to know more (as I look like your average fat 40 year old, lol and perhaps not someone with MS). I was buying my usual bundle of Sunday papers last week when the guy at the counter asked me why I was so red in the face. I explained about heat intolerance in really simple terms and he was fascinated. AND he gave me a lovely compliment along the lines of, ‘well good on you for not letting MS get in your way’. We have to teach people that disability does not always equal Wheelchair.
And I agree, we need more MS nurses. They are beyond wonderful.
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I agree. But if we’re going to rebrand can someone get the MS Society to ditch the orange T shirts? When I wear mine to raise awareness, raise money etc I only raise awareness of how hideous most people look in orange! it is sooo unflattering when combined with pale skin, pale hair and a larger than size 10 body. And the neckline does not go with big boobs either…. (“I have MS and I’m ugly”….)
I’m now going to calm down!
Oh, I’m totally with you on that one!It is quite possibly the most unflattering cut? And yup, the, um, colour scheme leaves a lot to be desired. ‘I have MS and I’m ugly’ – exactly.
What about a lovely powder blue colour scheme or lime green?? something zingy and fresh. Bright red? Orange and black is sooooo depressing and old fashioned.
Maybe the Society should launch a competition, asking for re-branding schemes. The winner gets an air conditioning unit…..
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thats a really good idea! as long as they get input from a person who actually has MS or it would be pointless.
ooh air conditioner would be lovely 😀
Definitely! What do us MSers want to see – how do we want to be portrayed? Suffering victims or people just getting on with life alongside MS?
I would love and air conditioner, or one of those noiseless Dyson fans. Or even a years supply of Maltesers 🙂 (note to personal trainer – joking)
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I think the rebranding of MS is also an issue within the circle of people with the disease themselves . Whilst giving money to an MS collection recently and making conversation with the people collecting I was told that I didn’t look like I had ms , that at least I could carry my own shopping and in front of my 11 year old daughter I was told to get her checked out for MS . Suppose I was being naïve not to expect inappropriate comments from those I assume would understand and possibly have ms themselves !
That’s truly shocking!!!! We sometimes are our own worst enemies.
I’ve had a similar (but not quite as bad) experience as you. I used to go to a local support group when I was first diagnosed but stopped going as I was fed up being told by other MSers how ‘lucky’ I was and how much they were suffering. They knew nothing about me! They had no idea I was being bullied at work, or that I was having relapse after relapse.
Meh.
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Meh indeed ! I’m lucky my daughter shrugged off the advice about getting her checked,lucky I’ve discussed it with my kids in the past in my own way.Hard to be judged for not looking or actinglike someone else expects you too !? Have had enough issues with that with family and friends in the past.Like you say , we need an update . MS and understanding its invisible symptoms need to be as much a part of that as dispelling the myths that ms is about being in a wheelchair.
Well said!! There’s a great MND campaign going on right now and wish we could do something similar – bring MS to the masses, dispel the myths!
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