A young woman from Rainham who has multiple sclerosis (MS) has said she receives alot of judgement from other people about her condition.
22 year old blogger Aimee Emery from Rainham in Essex was diagnosed with relapsing MS last year.
With the World MS Day (30 May) theme this year #MyInvisibleMS, she wants people to know they shouldn’t judge a book by its cover.
“You wouldn’t tell someone they don’t look like they’ve got cancer”, says 22 year old Aimee Emery, from Essex, who blogs about life with MS.
“But even at the doctor’s the receptionist announced ‘you don’t look as if you have MS’, in front people waiting.
MS damages nerves in your body and can make it harder to do everyday things, like walk, talk, eat and think. Three times as many women as men are affected and symptoms, including things like sight loss and muscle spasms, typically appear in your 20s and 30s.
Because symptoms are often invisible, many people 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.
Former care worker Aimee, who lives in Rainham with her family, continues:
“I’m very fatigued all the time, it doesn’t matter how much sleep I get, combined with eyesight problems, it’s impossible for me to work right now, but I was refused disability benefits on the grounds that I had good eye contact, and was well presented.
“People have a completely warped idea of what disability looks like. I’ve even lost touch with friends who 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.”
MS is unpredictable and different for everyone. People experience different symptoms at different times and the impact of these can vary.
“At the time I was diagnosed my manager was not very understanding. I rang from the hospital to explain I wasn’t going to be in the next day, but his attitude was: ‘well I’ve got a friend with MS and he’s OK’?
“People don’t understand how difficult it can be just because someone looks fine, doesn’t mean they are. I had a lot of judgement from other members of staff too.
“I think some of the older ladies were thinking ‘well if I can do it so can she!’, because there just isn’t enough education about the condition.
Thankfully other people have been great and my family have been really supportive.”
Genevieve Edwards, Director of External Affairs at the MS Society, says:
“It’s not possible to say, just by looking at someone, if they have MS or what their needs might be. It is a very complicated condition and invisible symptoms are one of the trickier aspects people must navigate.
“Because symptoms often can’t be seen, this can lead to judgement from those who don’t know much about MS – who may for example wonder why a person isn’t working.”
6 in 10 people have experienced prejudice because of their condition, an MS Society poll found nearly half (47%) say they’ve been accused of exaggerating their condition because they ‘look so well’. More than 100,000 people in the UK have MS and World MS Day is a time to learn about these challenges. For information about MS visit www.mssociety.org.uk.