I can still remember the day vividly. It was November 2006 and I’d turned to check the time while sat in an art class at school. As I studied the clock, I noticed my eyes had gone fuzzy.
By the time I woke up the next morning, my life had changed forever – I couldn’t walk, see or hear properly. Beyond terrified, my immediate thought was that I had a brain tumour. I was 15 years old.
I crawled to my parents’ bedroom, screaming for help, and we went to A&E.
What followed was hospital visit after hospital visit while my symptoms persisted.
I had numerous MRI scans, a lumbar puncture, hundreds of blood tests and neurological exams. The consultants had a list of suspected conditions but never told me what these were. Meanwhile the symptoms remained, but their severity changed constantly.
In January the following year, a consultant finally told me that I had ‘highly active, aggressive, remitting multiple sclerosis’.
As I sat in the treatment room taking in his words, I had no idea what this meant but I could tell from my parents’ reaction – they broke down in tears – that it was bad. I naively asked if I would need chemotherapy and how they would cure it.
I was so confused because I hadn’t heard of MS and I felt anxious for my poor parents.
My doctors told us they had never seen MS in a 15-year-old. It is a degenerative condition caused by your immune system attacking your central nervous system, and most people are diagnosed in their 20s or 30s with symptoms often taking many years to develop.
There was no information on teenage patients, nothing about treatment or management for symptoms. All the information was aimed at much older people.
My doctor also couldn’t give me a prognosis because she hadn’t seen MS in someone so young and it affects everyone differently anyway.
Until this point, I had been a typical teenager – I was into art and graphics at school, went to the cinema and met up with friends. Suddenly, I couldn’t do any of that. I thought my life was over. I felt robbed, like everything I had dreamed of had been taken away and my life as a disabled person had been laid out in front of me.
I missed the fifth year at school, and because we had moved house around the same time, I hadn’t gotten to know many people. This meant I could text my old friends but not go to see them. Those friendships dried up and I felt really lonely, as well as betrayed and hurt.
My symptoms became progressively worse over two months. I couldn’t feel anything throughout my body, I lost my sense of taste. I still had issues with my hearing and vision and used a wheelchair.
I felt increasingly helpless and couldn’t envision any sort of future for myself. Like most teenagers, I had assumed I would go to university, have a career, get married and have children. But now I couldn’t imagine anyone wanting to be with me.
I had no choice but to cope with the symptoms, and became completely dependent on my parents – not only for physical support, but also emotional – they filled the gap where my friends had been.
When I was 16 I attended an MS support group but everyone else there was at least 30 years older. One guy laughed at me and said, ‘You’ll be like us one day’. That put a wall up around me, I never wanted to be told that again. At the same time it made me determined not to be like them, not to be beaten by this condition.
My neurologist got me a drug called Tysabri, which at this point had never been prescribed for someone under 18 and thankfully the treatment slowly reversed my symptoms. I started my first dose in March 2007 and by the June my parents and I were able to go on holiday in Turkey.
I was so grateful the drug was working, and I can remember the last thing to come back was my eyesight. Until then I had been forced to wear an eye-patch because of double vision. One morning, I woke and I could see again. I burst into tears, I was overjoyed.
I’m still on the same medicine today.
Nine months after my first attack, I’d returned to school and passed enough exams to get me into uni to study architecture. It felt like a massive achievement. I chose Edinburgh because it was near our home.
University was a turning point for me, because it’s where I met Kevin, in my last year of studying. Meeting him allowed me to appreciate and understand myself.
I knew that I was gay. I’d always been comfortable with my sexuality but being a gay man, having MS and being diagnosed young had made me feel like a minority within a minority within a minority.
I had never told anyone I was gay, but here was a man I felt comfortable enough with to have that conversation.
I was attracted to how confident Kevin was. Being with him is like going out with your grandad, everyone knows him! I’m quite reserved and he brought me out of my shell.
I was worried about telling him about my MS because I was scared he wouldn’t want to be around me, but I found the courage to talk about it the first night we met.
He was completely cool about it and to my amazement already knew what MS was.
My condition has never affected our relationship. Kevin allows me to see there is a path that is not focused on the illness, but on life outside it.
In January this year, he proposed.
We had climbed to the top of Goatfell, the highest point on the Isle of Arran when Kevin got down on one knee. It was a complete surprise and we’re planning on getting married in October.
As for my MS, in a way, I feel lucky. I still have attacks but my neurologist thinks that as my symptoms came at such a young age, my brain and body were still developing and were capable of putting up a fight – it could rewire itself.
I’m now at a point in my life where I’m able to live with MS as a gay man. The two are intertwined because I had to learn to live with each of them separately but not be defined or stereotyped by them. I never thought I’d accept them together as one.
To anyone who is diagnosed with a life-limiting condition, I say: find your niche, find people like you. And don’t give up on your ambitions, re-think how you approach them, but know that they are still in reach.
In many ways I have achieved the dreams that I had before the attack, apart from having kids – which Kevin and I would love, but right now, we’re just enjoying the present.
I wish that terrified 15-year-old boy had known just how happy he was going to feel all these years later.
For more information about multiple sclerosis and support visit shift.ms here
Do you have a story you’d like to share?
Get in touch by emailing jess.austin@metro.co.uk.
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source https://metro.co.uk/2020/07/07/diagnosed-ms-15-never-find-love-wrong-12923329/
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