Calling out prejudice in MS Week
In our poll*, people with MS reported widespread issues with misunderstanding and prejudice.
- 93% of respondents felt people who don't have MS don’t understand what it is
- 92% wanted greater understanding of MS from the general public
- Six out of ten (60%) said they have experienced prejudice because of their MS
What does it look like to have MS?
“You wouldn’t tell someone they don’t look like they’ve got cancer”, says 22 year old Aimee Emery, who found out she has relapsing MS last year. “But people don’t seem to understand MS, and I’ve had a lot of negativity since I was diagnosed. It happens in the most surprising places – even at the doctor’s the receptionist announced ‘you don’t look like you’ve got MS’, in front of all these people waiting. What exactly does it look like to have MS?!
"You wouldn’t tell someone they don’t look like they’ve got cancer"
“I’ve lost touch with friends because they couldn’t handle me being different. They kept having a go at me for not going out, saying I looked OK in pictures. But just because I can take a selfie every now and then, that doesn’t mean I can walk.”
Invisible impact of MS
MS damages nerves in your body and makes it harder to do everyday things, like walk, talk, eat and think. It can be painful and exhausting but, because symptoms are often invisible, many without MS struggle to understand its impact. For example 90% of people with MS experience extreme fatigue, which cannot be seen but can severely affect quality of life.
Aimee continues: “I’m very fatigued all the time, it doesn’t matter how much sleep I get I’m still drained. That combined with problems with my eyesight means it’s impossible for me to work at the moment. But I was refused PIP (disability benefit), on the grounds I was ‘slightly overweight, had good eye contact, and was well presented’. People have a completely warped idea of what disability looks like and that can be really damaging.”
I'm not drunk, I have MS
Our blogger Martin Baum was diagnosed with relapsing MS in his mid-20s. He says: “I was out recently and had to take my walking stick, which I don’t always need. For some reason one friend thought it was funny to push me and I fell backwards. All he said was ‘I didn’t know you were that bad’. To my friends you either need a walking stick or you don’t and there is no grey area. But just because someone seems fine one day doesn’t mean they are the next.
“Having MS also means my thoughts and words are sometimes scrambled. Even with those who know me well, if I stumble ordering a round of drinks in the pub someone will pipe up: ‘Ignore him he’s drunk.’ It’s very ignorant and there’s a real job to do to educate people, even those with the best intentions.”
We need greater public awareness of MS
Our Director of External Affairs Genevieve Edwards says: “Because MS is unpredictable and different for everyone, the condition can be difficult to identify – even for healthcare professionals – so we appreciate why people can struggle to understand MS. That being said, we desperately need greater public awareness of MS.
“Incidents like those Aimee and Martin experienced can be really harmful and upsetting, and shouldn’t have to be tolerated. It's not possible to say, just by looking at someone, if they have MS, but everyone deserves to be treated with respect and understanding. MS Week is the perfect time to learn more and challenge your preconceptions.”
Add your voice to the conversation this week, share your reality of life with MS and help show people #ThisIsMS.