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“I don’t want anyone to go through the same thing I did”

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Amy drawing at the table

Amy was diagnosed with MS when she was just 14 years old. She faced isolation, bullying and despair, but has emerged from her experience stronger, and determined to help the MS Trust make sure no young person ever has to take on MS alone.

I’m Amy and I was diagnosed with multiple sclerosis when I was 14 years old. I’m 17 now and I’m studying for my A levels. I enjoy making art; I think my favourite artist is Andy Warhol. I love his bold portrait of Marilyn Monroe.

The first symptom I remember having was I couldn’t feel my legs and my right arm. I knew it wasn’t right but I only told my mum. I waited two weeks just getting more and more worried, and in the end I went to the doctor.

He asked me to touch my nose with my finger. I was really nervous and I knew it didn’t feel right. I had double vision. He asked me to go back to the waiting room.

I waited and waited and eventually the doctor told me I had to go to hospital. I didn’t really know what to do. I was there for about six hours with my dad and I was so nervous. I was lying there crying.

When I had the MRI scan they saw lesions on my brain and they said that there was demyelination. I didn’t know what that was. I went to hospital and it went from there. I had intravenous steroids and stuff like that.

It took quite a long time because I was so young. They don’t often see demyelination and white lesions on young people’s brains. I just thought “What’s happening to me?”.

I was just starting to choose my GCSEs and my friends were quite worried about me. I wasn’t in school for quite a while. I went to my hospital where I got a pediatric neurologist and then I had all sorts done. I had the lumbar puncture and that was first time anyone mentioned MS. They told me there was demyelination and it could be MS. When I went back to the clinic in August after another MRI scan they told me it had progressed and I had more lesions on my brain. That’s when I was diagnosed with MS.

I thought I was going to die

I had never heard of it. I was crying every day because I was thinking what is wrong with me? I thought I was going to die.

It got a lot worse after I was diagnosed. I didn’t know what to do. I was on my own to be honest. Nobody really explained what MS was.

When I went to the specialist in 2015 I got a nurse who explained to me that MS is a condition that affects your brain and your senses. I was confused at first. I did Google it and a lot of other stuff. I wanted to know what might happen. I found out about a lot of symptoms that haven’t happened to me. They could do one day. Most things haven’t happened yet, so I’m lucky in that respect.

Eventually I got a long letter saying I had MS and then a description of it. I just started crying. I didn’t go to school. I was just so sad. I was like “This is me forever now”.

My mum said “I I wish it was me. I would take it off you if I could”. My dad was struggling too. They struggled to understand what I was going through and because I was crying all the time I couldn’t really express my thoughts properly.

At school they thought I was lying

I got quite angry and frustrated. I think anyone would be if they couldn’t write or walk properly. And not having people understand properly because I was so young. Some people at school thought I was lying.

I went back to school after about two or three weeks off after my lumbar puncture. I was crying because of the excruciating pain. I had a spinal headache and I felt dizzy all the time. I wanted to get back to school. I know that it sounds really weird but I felt isolated.

When I got back to school it was a bit better but it was up and down for a while. A lot of people I thought were my friends turned out not my friends. One day in the playground I was backed into a corner by people I thought were friends and told I was a liar. I tried hard not to cry and then I walked off.  That night I cried. I went to my mum and said “I’m being bullied. I can’t stand it anymore”. I spoke to everybody that I could at school and nothing was done.

Year 10 and year 11 were very difficult for me because I had GCSEs and revision to do. I was very lonely for a very long time. I sat in my room for days on end and I just cried my eyes out. I don’t think people know how to articulate their emotions when they’ve been told that they have something that they can’t get rid of.

I think people in schools need to be more aware of MS. It feels like more young people are being diagnosed. I think it needs to be discussed in the open like diabetes or autism or dyslexia.

When I was younger I was very stubborn. I told people I didn’t need help. When I had a numb hand I sat there shaking, trying to write because I was determined not to let it get me down. I limped to school with a numb leg in the middle of winter and it took me 40 minutes. But I was so determined not to let it get me down. Because I was sick of crying, sick of being so upset all the time about something I couldn’t help.

Getting over the wall

I needed to overcome it. When you’re running, you sometimes feel like you’ve hit a wall but you think “I’m near the end I can see the finish line!”. I just thought “I need to go over that wall, I need to get better, I need to figure something out for myself”.
And eventually I did, because my teachers helped me. I had my Head of Year talk to me about strategies to cope with my MS. My art teacher became my mentor in a way. I could go to him anytime and say “This is getting me down” or “I can’t understand how to do this” and he’d help me to do it. So some teachers understood me.

I went to see my neurologist and he told me about different medications. I wasn’t very happy about injecting so I went for Tecfidera. I felt it was right for me because it was a tablet which I could take easily. I started it in January 2015 and I have been taking it ever since.

It works for me quite well. I take it twice a day. I find it’s better to take it after school because I get hot flushes. It might have been a placebo effect but I felt better about myself because I thought this is going to be a new me. And since that day I have felt a lot better! Well, actually, a month after I started Tecfidera I had the biggest relapse I’ve ever had and was in the hospital for six days. But I haven’t had a relapse since then.

I don’t want people to struggle on their own

Since I was first diagnosed I have felt there should have been more information aimed at people my age. A lot of what I found assumed you were at least in your 20s, if not older. I feel like it didn’t acknowledge that it could happen to you if you were a teenager.

What would I say to a young person who’s just been diagnosed? I’d say it’s going to be okay! You may think at first it’s not, but eventually you will succeed. I’m not saying look at me and look at all the great things I’ve done. But I have overcome that wall. I have gone over it and I’ve become a better person. When I was 14 years old I was a negative person but now I’m a lot more positive about myself. I’m happier now because I got out of that little bubble. I see the world is a bigger place. It’s my canvas and I’m going to make sure it is the best painting I’ve ever done.

“I don’t want people to struggle on their own. By helping the MS Trust produce videos for young people you could make a huge difference for people like me.”

The MS Trust is working hard to to make sure that no one has to manage MS alone. But we need your help. A donation of just £25 could help a young person contribute to a video that helps thousands of others.

To find out how you could make a difference call us today on 01462 476700. 

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