Half of people with MS have been mistakenly accused of being drunk

The MS Society says disabled people face ‘unacceptable’ levels of mistreatment or stigma, as the charity releases findings from a survey into the discrimination of people living with MS.

Released on the eve of the Paralympics, the survey shows that almost half (45 per cent) of people with MS have experienced mistreatment or stigma because of their symptoms, while 12% aren’t sure if they have experienced it. The survey also reveals that supportive family and friends help people with MS cope with difficult situations.

The most common experience is being accused of being drunk because they were having trouble walking (49 per cent). 47 per cent say they’ve received comments that they are exaggerating the extent of their MS because they ‘look so well’, while 35 per cent have been accused of wrongly parking in a disabled bay because they didn’t appear disabled. Three quarters (73%) of people with MS say that living with the condition is more difficult when people treat them badly or stigmatise them because of their condition.

MS symptoms typically appear when people are in their 20s and 30s and can include sight loss, disability and fatigue. It’s an unpredictable condition – one day a person with MS might be fine but the next they might lose their sight or be unable to move.

Catherine Doran, from Derry, who was diagnosed in 2009 when she was 27, said she has been challenged on a number of occasions while using a disabled blue badge. She explains, "MS is an illness with many invisible symptoms and I use the blue badge on many occasions, sometimes when fatigue and pain just won't carry my legs very far, other times when I need to find a bathroom fast. I understand that these are things people can't see at first glance but I am still extremely embarrassed when I'm tackled about using it. The way I see it, I wouldn't have a blue badge if I didn't need one, so why challenge me. I have spoken up for myself and have said 'If you want the parking bay, you can have my MS too' but it leaves me shaken and uncomfortable."

Today over 100,000 people are living with MS in the UK (4,500 in Northern Ireland), yet 76 per cent of people living with MS believe that the public’s awareness of their condition is ‘low’ or ‘very low’. 1,018 people with MS shared their experiences with the MS Society/Opinium survey.

Patricia Gordon is the Director of the MS Society in Northern Ireland: “The results of our survey are worrying and unwelcome; by releasing them we hope to challenge these damaging, negative perceptions. MS is a condition that’s already unpredictable and challenging to live with and this stigma and misunderstanding makes life even harder for many of the 100,000 people in the UK with MS. If anyone needs support, we would urge them to call the MS Society helpline on 0808 800 8000.”

The survey results also showed that understanding family and friends can make a positive difference to those living with MS. Of those people living with MS who said they were supported during a difficult incident, 63% received help from a partner, 40% from immediate family and 34% from friends.

Catherine Doran explains, "My family and friends are great at supporting me. They make an effort to understand MS and know how to help me without being told. They'll often go ahead and find me a seat and work out where the nearest bathroom is. It's small gestures like this that help me feel less alone in living with MS."

Patricia Gordon continued: “The MS Society is always here for anyone affected by MS – both people living with the condition and their family and friends. Today we are launching our Live It Well campaign, which includes day-to-day practical advice such as information for family and friends about the condition, cookery demos and talks from medical research experts.”

To access the Live It Well content, please visit:

www.mssociety.org.uk/liveitwell

Catherine Doran also runs a local group for women who are suffering with MS. She spoke with Q radio about the support service: