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 By releasing them we hope to challenge these outdated, negative perceptions.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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