I was diagnosed with the relapsing form of Multiple Sclerosis (MS) last year, aged 20. The condition damages nerves in your body and makes it harder to do everyday things, like walk, talk, eat and think. It can be painful and often exhausting, and there isn’t a cure so I quickly had to realise that my life was going to change.
To the untrained eye though, nothing is really different. So one of the trickiest things is helping others understand what I’m going through.
One thing I’ve noticed since being diagnosed is that 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 an ‘invisible’ condition – meaning you can’t really tell what’s going on beneath the surface. Unfortunately the lack of understanding around invisible illnesses comes from the most unbelievable places – not just friends but colleagues and even in doctor’s surgeries!
At the doctor’s once 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?!
People can be quite narrow minded when it comes to conditions that aren’t visible on the outside. Just like for anyone struggling with mental health issues – we all know you cannot see anxiety or depression – it’s the same for me.
You have to dig beyond the surface when it comes to certain things in life. People also don’t expect a young girl like me to have MS, thinking it’s an ‘old person’s disease’. But that’s far from true.
Aged 21, my life ahead of me has suddenly become unclear. There are a lot of things I’m unable to do now. I can’t go to work like I have done since the second my national insurance number arrived aged 16, and I was straight on the internet applying for all sorts of jobs. 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.
I have so many symptoms you can’t see. In addition to the fatigue I’ve lost the use of my left arm, lost vision in my right eye, lost bladder control, and gained excruciating pins and needles and numbness, which mean I’m very uncoordinated and often unable to walk or move.
In spite of all this however, most of the time I’m very healthy looking. I still make an effort with my appearance – I’ve always been a girly girl who loves to do her hair and make-up. Some days it’s not possible, but I will never stop trying!
I went out recently and while getting ready with optic neuritis and no glasses, and bad spasms in my fingers, I still managed to put on a pair of false eyelashes and ensure my nails were painted. Let me tell you that was not an easy task!
Although I have MS, I am and always will be me. In truth, I believe this diagnosis has been the making of me. I started a blog in the hope of raising awareness of my condition, but if it makes people see any invisible illness in a better light that would be amazing. I want people to approach me if they need to talk things through, because I know how lonely this journey can feel.
Even though I have an amazing circle of people in my life, who understand me and constantly lift me up, there is still a minority who don’t. That’s when it can feel like you’re most alone because, the reality is, sometimes you just want people to understand.
I am ME, I am not MS.
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