Half of people with MS have faced ‘unacceptable’ mistreatment, says MS Society’s latest study

Just how often have people living with MS been labelled as drunks or had it implied they are ‘putting on’ the symptoms?

The answer is almost half of us in that situation say they have received such treatment, according to the latest survey conducted by the UK’s MS Society.

Announcing the findings on its website the society says:

Almost half (45%) of people with MS feel they have experienced mistreatment or stigma because of their symptoms, according to our most recent survey.

Our report showed that 49% of people with MS have been accused of being drunk because they were having trouble walking. Another 47% say they’ve been told they are exaggerating the extent of their MS because they ‘look so well’.

Diane Donat (Pic: MS Society).

Diane Donat (Pic: MS Society).

Diane Donat, who lives with MS, shared her experience: “I have a poor sense of balance and one morning I fell over in a busy marketplace. As I struggled to pull myself back up, a woman walking past pulled her child away from me and said ‘Disgusting drunk!’; I was too stunned to respond.”

Unsurprisingly, 73% say that living with the condition is more difficult when people treat them badly because of their condition.

Our survey also revealed that:

  • 35% have been accused of wrongly parking in a disabled bay because they didn’t appear to be disabled
  • A further 12% of respondents weren’t sure if they had experienced mistreatment.

Today over 100,000 people are living with MS in the UK, yet 76% believe that the public’s awareness of their condition is ‘low’ or ‘very low’.

Michelle Mitchell, our chief executive, said: “The results of our survey are unacceptable. By releasing them we hope to challenge these outdated, negative perceptions.

“This is a condition that’s already unpredictable and challenging to live with, and this stigma and misunderstanding is making life even harder for many of the 100,000 people in the UK with MS.”

Diane explained that her loved ones make a big difference: “My family and friends are a shield for me against discrimination. They make an effort to understand my MS, and know how to help me without being told.”

Of those who said they were supported during a difficult incident, 63% were helped by a partner, 40% by immediate family and 34% by friends.

Michelle continued: “We are here for anyone affected by MS – people living with the condition and their family and friends. If anyone needs support, we would urge them to call our MS Society helpline on 0808 800 8000.”

The results of this survey are a terrible indictment of the perception of those who are fortunate not to have MS but also highlights the need for even greater efforts to be made to educate the general public.

• 1,018 people with MS shared their experiences with the MS Society/Opinium survey.

 

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Looks of disdain but I’m not drunk, I have a disability

A few years ago now, my then wife and I travelled back to where we used to live in London to spend the festive season with relatives and was met by looks of disdain by people not understanding about invisible illnesses.

On Christmas Eve we visited the church where we used to go and took part in the midnight service which included the blessing of the crib. Now, we were sitting towards the front of the church and were supposed to walk to the back, in procession, singing as we went. Because that is where the crib was situated.

At that time, I had been diagnosed with multiple sclerosis but was still walking fairy normally although my balance was not perfect. And when I say ‘walking normally’, I already had foot drop and had to think about every step that I was taking.

how good i lookThat’s what many people just cannot understand, just how much effort it takes to achieve that state where they can utter those thoughtless words “Oh, you don’t look ill,” or the equally abhorrent “You’re looking better.” No, we’re not. We might be putting on a good face on the outside but on the inside it’s a different matter.

Anyway, back to the church. And here it is necessary to consider several factors: I was trying to think about walking so that my foot drop did not make me fall; I was walking in a procession and had to be sure not to walk into someone; I was trying to sing, looking at a hymn book; and I was trying to keep my balance. Now those are four things at once and I was never good a multi-tasking, let alone with MS.

Well, the inevitable happened and I stumbled. I didn’t fall but caught myself on one of the pews which moved considerably and noisily before I regained my equilibrium.

People spun around to see what had happened and I noticed a few disapproving looks of disdain from worshippers who had joined the church after we moved away. They had no idea who we were and no doubt thought I’d been enjoying too much of the Christmas spirit, the bottled variety that is – although nothing could have been further from the truth. Not only was I sober, I had not touched a drop.

This was one case of my then invisible illness, my invisible disability, bringing those looks of disdain from people who do not know me or my situation and are too quick to judge.

We meet people like that all the time, don’t we?

 

 

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