I was 15 years old when I was diagnosed with MS, though in hindsight my problems started even before that, when I had optic neuritis aged 13.
My mum even said that I used to complain about the feeling of water running down my back as a child, when there was nothing there.
The diagnosis of relapsing remitting MS
The relapse that led to my diagnosis affected both of my legs. Perhaps because my father was a GP and my mother a physiotherapist, as soon as they realised something ‘not quite normal’ was going on with me, I was hotfooted to the nearest large hospital. It was there that I was diagnosed with relapsing remitting MS.
At 15, I knew very little about the disease. I think I’d vaguely heard of it once as a child, when a man in a wheelchair came to visit my school on a ‘disability awareness day’.
Seeing my normally very composed Dad cry whilst telling me I had MS made me realise just how significant it was. Now I’m a parent myself, I can see how hard it must have been for my parents at that time.
“I didn’t feel sick”
This all happened in early 1994, when there were few Disease Modifying Treatments (DMTs) available and I was not offered medication. Now I know that the push is for early treatment, I find it very frustrating.
At the time, though, I liked not having to take any medication - as taking it would mean that I was definitely ‘sick’.
The thing is, I didn’t feel sick. I didn’t associate myself with the people I saw in MS leaflets. Looking back now, I was probably in a bit of denial. I remember my parents telling me I should rest but I just kept going, even going to my school prom in the midst of a relapse that affected my walking.
My life changed after my MS diagnosis
MS led to me having to make changes in my life that I otherwise wouldn’t have. I needed to take time off school to attend medical appointments. I had to going through embarrassing medical situations like learning to self-catheterise. And I had to wear a leg brace and have regular meetings with school staff to see if I needed extra help. School were brilliant and very accommodating, though I hated feeling ‘different’ to my peers.
Being open about my diagnosis was hard. I didn’t want to feel different or have to act differently to any of my friends, so I actually told very few. I remember people thinking that I had just hurt my leg when they saw me limping occasionally. I feel like this was right for me at the time; it certainly takes confidence to admit that you are different, especially as a teenager. Luckily, I am much better at accepting that now.
MS makes me who I am
I can honestly say being diagnosed with MS as a teenager is one of the most important and significant things to ever happen to me. I feel that it has made me stronger, less likely to put up with things that aren’t right and I’m a compassionate and understanding person. I like to think that I would have been all of these anyway, even if I didn’t have MS!
Since diagnosis, I have gone on to go to university, travel, get married and have a career and kids.
I have now lived longer with MS than without it and MS is definitely part of what makes me, me.