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15 minutes with MS Trust volunteer Amy Mackelden

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Amy Mackelden

Amy Mackelden writes plays, poetry and pop criticism. Her most recent book is Adele: the other side, published by Eyewear Press. She was diagnosed with MS in 2014 and this year volunteered to join the advisory group of our MS Forward View project. Here she explains why she got involved and what inspires her

When did you start writing? What inspired you?

I remember trying to write a novel in high school, and writing lots of sketches for my drama group. Creative writing classes at Uni helped me get serious about writing and start submitting my work. I’ve always been more inspired by movies, TV and music than by books. I know a lot of advice to writers is to read as much as possible, but that’s not what inspires me, and I think it’s fine to find inspiration elsewhere.

When were you diagnosed with MS? How did you deal with this news?

I had a major relapse in Oct 2013, but didn’t get my official diagnosis until March 2014. Finding out I had MS was a shock but it also explained a lot of the problems I’d been having – immense fatigue, brain fog, trouble walking far or at speed, tingling and numbness. It wasn’t a fun thing to find out by any means, but it was a relief to know that there was a reason I felt the way I did, and that I wasn’t imagining it. It took a long time to really process the news and understand what it meant for my life.

Did you find anything or anyone in particular that helped you get your head round diagnosis?

My family are very supportive and always let me know there was a place for me at home whenever I needed it. I found that my circle of friends tightened – some people didn’t know what to say, or gave unhelpful advice. I’m sure they didn’t mean to, but having MS has made me reevaluate my friendships. I realised how much of a people pleaser I was before diagnosis, and knowing that I needed to manage my health led to me focusing on the friends who supported me no matter what, never judged me, and looked out for my best interests. One friend spoke to me for hours at a time on the phone and would talk about absolutely anything, and that really helped. Going to the cinema, and binge-watching TV shows helped too, escaping from stress for a while into other people’s stories. I exercised whenever I could, and also had some counselling and CBT. Cheryl Strayed’s writing helped me find confidence in myself again.

Why did you think it was important to get involved with MS Forward View?

I’m so grateful for the care and treatment I’ve received from the NHS and I was keen to be involved in a project that looked more closely at how the system works. Having received treatment in Newcastle, and then in Southampton, I’ve had experience of MS services in the UK and know that the system varies from place to place. I’m very outspoken about having MS, and think it’s important to discuss all the things that could make day to day life better for MS patients.

You’re working on a new show called MS is my boyfriend. Can you tell us more?

I’ve written several articles about different aspects of having MS, and I always try to be as honest as possible. I think life with MS would translate well into a theatre show, and would help give a voice to people living with the disease who feel like there’s not enough information out there, or struggle to be understood by their friends and family. I’d really like the show to deal with many of the subjects that don’t get talked about nearly enough, like the ways in which MS can affect a person’s sex life, or the crazy side-effects some of the prescribed treatments can give. There were so many things I googled when I got diagnosed and couldn’t find satisfying answers to. I want to help rectify that, and demystify MS in any way that I can.

Which 2016 Girls revival are you more excited about: Gilmore or Powerpuff?

Gilmore Girls, definitely. Netflix is the gift that keeps on giving and I’m excited to see what’s happened to all of the characters. Lauren Graham, who plays Lorelai Gilmore, retweeted an article I wrote recently about her, and I’ll definitely be writing many more pieces about the show before the new episodes air.

What would be your first piece of advice to a teenager who’s just been diagnosed?

The best piece of advice I received was to not make any rash decisions. Finding out you have MS is life changing, and it impacts almost every aspect of your life, so put yourself first and give yourself as much time as you need to process it. Only you know what is right for you.

Find out more about MS Forward view and more about Amy's work.


This story is part of the May 2016 issue of Open Door. Read the whole issue. Sign up to receive the latest news every quarter.

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