World MS Day: Rainham woman sets up blog to share her experiences after diagnosis last year
PUBLISHED: 07:00 30 May 2019
“Just because I can take a selfie every now and then, that doesn’t mean I can walk.”
These are the words of 22-year-old former care worker Aimee Emery from Rainham.
She was diagnosed with relapsing multiple sclerosis (MS) last year but after getting some negative reactions to her condition, Aimee decided to start a blog to highlight what it's really like to live with the illness.
"You wouldn't tell someone they don't look like they've got cancer", she said.
"But even at the doctor's, the receptionist announced 'you don't look like you've got MS', in front of all the people waiting.
"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 damages nerves in your body and can make it harder to do everyday things, like walk, talk, eat and think.
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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.
Six in 10 people with MS have experienced prejudice because of their condition, a poll conducted by charity the MS Society found and nearly half say they have been accused of exaggerating their condition because they "look well".
Amie, who set up her blog The Only Way is Up in February, hopes to help educate people by sharing her experiences.
She said: "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'.
"At the time I was diagnosed, my manager was not very understanding.
"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."