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Childhood MS: Amelia’s story

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Amelia* was diagnosed with MS two years ago when she was 14. *Names have been changed

"I realised that MS was for life and I had to get used to it, make some adjustments to my thoughts and make my thoughts more positive and optimistic for the future."

In this blog, Amelia* reflects on her experiences so far.

*Names have been changed

Can you give us a bit of background about yourself?

I'm 16 and since my diagnosis with MS my passion has become art. Instead of going out with friends like 'normal' teenagers I draw and post my art online.

How old were you when you were diagnosed with MS?

I was diagnosed with MS when I was 14 years old.

Looking back, did you have symptoms before this?

I had severe numbness in my right arm to start off with which prevented me from writing. I was at school at this point so I told my parents about this. Then after about two weeks, I had no sensation in both of my legs which made me struggle with my mobility. 

How did you feel about your diagnosis?

At first when I was diagnosed with CIS, I was so down and I was not optimistic about recovering from this because my neurologist told me there was a chance of MS when I was older. However, it only took about three months for the hospital to confirm my diagnosis [of MS] and, strangely, I was told about this on my 14th birthday but it wasn't confirmed properly until August of 2014. I felt like I was different because teachers at school treated me like I was not 'normal' when I got back to school after my diagnosis and my teachers were emailed about it. Also, a lot of my teachers patronised me and were not keeping my illness secret like I wanted it to be until I felt more confident telling others. I was often approached by pupils after teachers announced it in class sometimes...

Did life change for you after you were diagnosed?

My life did change because my 'friends' were in a significant amount of disbelief and that was with CIS but as soon as MS was in the picture my life changed forever. I had to get a new group of friends. I struggled with relapses for about a year because I was not taking any disease modifying drugs at this point because as a child with MS it was hard to tell what the side effects would be. At home, I cried every day for about a month because I didn't know what to do.

But I realised that MS was for life and I had to get used to it, make some adjustments to my thoughts and make my thoughts more positive and optimistic for the future.

How did your friends and family respond?

My family were very supportive but it took a while for my parents to tell other family members like my auntie and uncle. When they got round to it, people were very shocked but supportive. Every time I see my auntie and uncle they always give me a hug and a pat on the back as if to say 'you're going to fight this' even though I can't be cured of MS. Yet.....

Friends on the other hand were hard to come across to. As I said before with my diagnosis of CIS, I had to make new friends because my old 'friends' made me incredibly miserable and upset. But my new friends made me feel somewhat wanted in the world because I'm not 'popular' like most of the other people in my year at school but they were always there to talk to. There was this one person who was always there for me. After he moved back to his home country, I told him what my illness was because I didn't have the courage to tell him in person. I still feel guilty for telling him over a message on Facebook or Snapchat.... He should be credited for still continuing to message me every so often so, Jonny*, thanks for sticking by me in those tough times.

*Names have been changed

We’ve spoken to some teenagers who felt bullied or misunderstood by their classmates when they were first diagnosed. Did you experience anything like this?

I was bullied and picked on a hell of a lot. I struggled to get myself out of bed every day because of the people who constantly greeted me at school every morning with the same, nasty comments. "you're a liar", "you don't have MS, you're walking" and "I have MS too. I must now be called a compulsive liar". My school, even to this day, haven't spoken to the bullies and the whole situation started three years ago and I'm now going to go to sixth form with the same people which I don't want to do. I did two assemblies [to raise awareness of MS], one of which is recent and they still don't get that I HAVE MS. Also, I raised money at school and I raised £303.06 to be exact and I collected every penny and the people who bullied me and are in disbelief didn't give the £1 in that they were asked to do by the head teacher in a letter and an assembly one week prior to my fundraising day. 

What would you suggest to help anyone in this situation?

To people in the situation I was in, if I were an adult I would say 'ignore them', I know it’s hard but I know it's not possible in the school environment. So my advice would be to go to your parents and tell them, then go to a teacher that you trust and tell them and be stern with your words and make sure that the bullies are dealt with. Also, I would say keep your head up and don't cry and don't show the bullies that you're weak because you aren't and you can defeat them. Don't suffer in silence like I did for two years.

Which MS symptoms have you experienced?

I experienced numbness of my whole body at one point and, before I started taking Tecfidera, I struggled with numbness in my arms quite often. I was hospitalised because of a relapse in February 2015, which was my last major relapse, because I couldn't sit up on my own, like I was a baby. This was because I had a lesion of 10.26cm in volume on my cerebellum which has left me with permanent problems if I tilt my head back like when I try and get the last drop of a drink out of a can...

What do you do to manage your MS well?

To manage my MS, I take Tecfidera and I also take a high dose of vitamin D which is not recommended for people of my age but it has shown massive results. I haven't had a relapse since February 2015 and the lesion on my cerebellum has 'shrunk' to 1.96cm cubed in volume so that's pretty good in my eyes.

If you could go back and advise your teenage self, what would you say?

I would say "stay with the people who care about you the most. That would only be two friends and your family. The two friends being Jonny*, the greatest guy friend you have ever met and Alice*, basically your twin. She suffers with illnesses herself and she can understand how you feel when you say you feel unwell and shaky when writing. One day you will be strong and prove all of the bullies and doubters wrong. Even though I didn't mention all that many people, they mean a lot to you and you mean a lot to them (hopefully). You will be greater than you think and you can conquer the world one day knowing that you're an MS fighter and a happy one too!"

*Names have been changed

What would you suggest to a young person who has been diagnosed recently?

To young people diagnosed recently, I would say, even though this sounds cliche, it gets better and you just need to be patient however hard it may seem now. Keep your true friends and family close because you will need them and you will hopefully not suffer like I suffered which was in silence. So, tell someone if you feel unwell or if you think a new symptom has come along because the quicker you act, the better you will feel. 

Compare Amelia and Stephanie's stories

Amelia* was diagnosed only two years ago at the age of 14. We also asked Stephanie, who was diagnosed over 15 years ago when she was 18, the same questions. Stephanie has represented Team GB at the Paralympics and tells us her story.

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