Just because I look healthy, doesn’t mean I am
Amy Thompson and Aimee Emery were both diagnosed with MS last year, when Amy was 20 and Aimee was 21. Both are keen bloggers determined to educate the public about the challenges they face and how looks can be very misleading.
World MS Day 2019
This year the World MS theme is #MyInvisibleIllness, a great opportunity for those living with MS to share their experiences and raise awareness.
In our recent poll of 580 people with MS, we found that 60% had experienced prejudice and 92% told us that they want greater understanding from the general public.
And in our online survey of over 1000 people with MS, we found that nearly half had been accused of exaggerating their condition because they “look so well”.
The hidden symptoms of MS
Amy, from Manchester, says: “People have a certain idea of what MS is and who has it. You would never know I’ve got MS and would probably be shocked to find out. My mission is helping people understand what’s going on beneath the surface. Just because someone looks fine, it doesn’t mean they are.
“Of course, I’m grateful that I don't visibly look ill. But just because I’m 21 and 'look healthy', it doesn’t mean that everything is great, and my life is perfect. One of the greatest challenges for me is explaining how, even though I look normal, I often feel very ill or am in a lot of pain.
"Most people expected me to look different or be less able-bodied after my diagnosis. In actual fact, I look exactly the same.”
One of the greatest challenges is explaining how, even though I look normal, I often feel very ill or am in a lot of pain. Amy Thompson
"People have a warped idea of what disability looks like"
Aimee, from Essex says: “You wouldn’t tell someone they don’t look like they’ve got cancer, but even at the doctor’s the receptionist announced, ‘you don’t look like you’ve got MS’, in front of all these people waiting.
“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 I was ‘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.”
Just because I can take a selfie every now and then, that doesn’t mean I can walk. Aimee Emery
The impact of invisible MS symptoms
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.
Genevieve Edwards, our Director of External Affairs, says: “It's not possible to say, just by looking at someone, if they have MS or what their needs might be. It’s a very complicated condition and invisible symptoms are one of the trickier aspects people must navigate.
"This can lead to judgement from those who don’t know much about MS – who may wonder why a person isn’t working or needs more rest than usual.”