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Amy's story: Living with an invisible condition

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Amy

Amy was diagnosed with MS at just 17. Here she tells us about the challenge of being diagnosed at such a young age, living with an 'invisible' condition, and why she's determined MS won't stop her. 

My name is Amy, I am 28 years old and I have had relapsing remitting MS for 11 years.

Being diagnosed with MS was unexpected and scary. I had a fall in the bath and down the stairs which made my eyesight blurry. I visited an optician, my doctor, and then an eye specialist. A field vision test showed I had peripheral vision and then the same day I had a CT scan which showed inflammation on my brain. I then had an MRI scan which showed a lot of scar tissue on my brain, from this I was told I had MS and had had it for years. I'd always just been 'clumsy' Amy. 

I had no idea what MS was at first, what it meant for my future or where to go from the diagnosis. I researched MS on the internet and all I saw were wheelchairs and uncertain futures. I thought this was going to be me!

"Living with MS is hard. The invisible illness. On the outside you look normal, maybe even like nothing is wrong with you, but on the inside you feel completely different"

I had my family and friends around me, and everyone offered support, but it was hard to accept any of that support or take in what they were saying. I felt that only I knew what I was going through. But eventually I let people in; I expressed my thoughts, my fears and just having someone to sit and listen helped me so much.

My MS nurse visited and talked me through the different disease modifying drugs (DMD’s) that were available. The first one I went on was Copaxone, an under the skin needle that I injected daily. I then changed to Avonex, which I was on for two to three years, before changing to Tysabri which I have now been on for seven years.

When I was diagnosed I thought that my life was over. I could not have been more wrong. I have not let MS stop me fulfilling any of my dreams. Two years after being diagnosed I decided to take a break from all treatment and spent the summer as a holiday rep in Portugal. I had the best experience of my life and my health was amazing. I then returned home and met my life partner. I have now been married for six years and have two children.

When I first met my husband I was scared about telling him I had MS. On our first date I told him; I did not expect him to know what this was but it was something I was prepared to talk about over time. I was lucky he was a good one and went home to research it himself. The next time we met he told me he knew what it was and would not let that change the way he looked at me.

Living with MS is hard. The invisible illness. On the outside you look normal, maybe even like nothing is wrong with you, but on the inside you feel completely different. That is the hardest thing I have found about having MS. I have learned how to adapt my life in ways to suit my condition that day. To tell you the truth, I have done it for so long now it just feels normal and I don’t feel different to anyone around me.

Being diagnosed with MS at a young age was hard; it was difficult to understand what the illness was, what this would mean for the rest of my life and what my future held for me. But I have not let MS stop me. To me, this is the most important thing. Have a positive mental attitude and beat the MS before it beats you.

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