A third of people with MS have been accused of wrongly using disabled parking bays
Half of people with Multiple Sclerosis (MS) have been mistakenly accused of being drunk, new research has revealed.
The MS Society said disabled people face unacceptable levels of mistreatment and stigma, as it released 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 of people with MS have experienced mistreatment or stigma because of their symptoms, while 12% aren’t sure if they have experienced it.
There was one morning before 9am in the main street, I fell and was lying on the pavement and a lady tutted and stepped over me. That really hurt - Karen Pickering
The most common experience is being accused of being drunk because they were having trouble walking, which has happened to 49% of people.
Almost as many, 47%, say they’ve received comments that they are exaggerating the extent of their MS because they "look so well”, while 35% have been accused of wrongly parking in a disabled bay because they didn’t appear disabled.
Three quarters 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.
Karen Pickering, 34, was diagnosed with relapsing remitting MS eight years ago. The former carer says she has encountered stigma many times.
Karen said: “There was one morning before 9am in the main street, I fell and was lying on the pavement and a lady tutted and stepped over me. That really hurt.
“Having an illness that tries to keep you down and can change who you are is upsetting enough and it takes away so much confidence you once had in yourself. To then have people judging you and kicking you when you're down is completely unacceptable.
“In a separate incident, I was at a supermarket in a different town and parked in the disabled bay with my blue badge on display. A couple were sitting in their car watching my every move whilst staring and pointing. The man even got out of his car to look at my blue badge in the window. They were sitting shaking their heads.”
Karen added: “Times like these hurt a lot and can make you feel like a fake. I use one or two crutches but not a wheelchair. The judging from some people can really make you feel worse than you already do. Having an illness which can sometimes be invisible is bad enough without the stigma attached to it.”
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.
Today over 11,000 people in Scotland are living with MS, and more than 100,000 in the UK, yet 76% 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.
Morna Simpkins, director of the MS Society Scotland said: “MS is an incurable, fluctuating condition which can manifest in many different ways.
“For more than 11,000 people in Scotland the challenges of MS are a daily reality. The results of this survey are completely unacceptable and it’s time to work together to challenge these outdated and stigmatising misconceptions.
“We have a freephone helpline and we would urge anyone living with MS who needs support to get in touch 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.
Simpkins added: “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.”