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Sharing my MS story was empowering

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Jenna

Having kept her MS secret for eight years, MS Trust supporter Jenna decided to open up about life with the condition earlier this year – and says it was the best decision she’s ever made. Here she tells us about the empowerment she felt sharing her story and raising awareness of MS.

I was first diagnosed with MS nine years ago, as a 22-year-old university student pursuing a career in teaching English. The diagnosis was a complete shock, especially as my family and I had very little knowledge of the condition. Thankfully, MS has not prevented me from following my dreams and every day I get to enjoy life in a classroom.

In the years that immediately followed my diagnosis, I’m very grateful to say that my medication was the prime reason for any changes to my lifestyle. As I was on Copaxone, I had to ensure that I was home relatively early to allow time for any discomfort to pass post injection before I wound down for the evening. Any symptoms I experienced were temporary and didn’t greatly affect my day to day life.

Fast forward six years, the meddlesome face of fatigue became a factor. To tackle this (or at least to attempt to!) I’ve had to be more sensible about what I hope to achieve on any given day, adjusting, or at times postponing, my goals if needs be. I feel blessed to still be teaching full time and continuing my role as second in the department, with only a few adjustments being made to allow me to do so. I’ve also moved onto Gilenya and no longer have to schedule my day around my injections.

"Living with MS does not have to be the end of your world. I believe it’s about tweaking the time that we have to ensure we have the most awesome time possible in our story"

It was only this year that I felt able to share my condition with the public, spurred on by my husband’s decision to run the London Marathon to raise money for the MS Trust. For me, this was the best decision I have ever made. The response that I received from friends, family and colleagues was nothing but words of love and support. I suppose there was also an element of surprise and then admiration that I’ve been living with the condition, undetected, for so long.

The opportunities that have emerged as a result of my decision to share my condition have also been beyond anything I ever imagined. Last month, I was contacted by the MS Trust to see if I’d be interested in appearing on BBC East Midlands to speak about how MS has affected my life, having been diagnosed at such a young age, and to promote MSTV. Being able to share my feelings on air truly gave me a sense of empowerment over my condition that I’ve rarely experienced. During the aftermath of the BBC interview, I was also grateful to be given the chance to deliver assemblies at the school that I teach at to explain what MS is and how invisible conditions can be challenging to live with. To be honest, being able to raise awareness on such a scale made me wish I’d had the confidence to speak up sooner!  

There are still days when I feel like life has dealt me an unlucky card, but thankfully these times are few and far between. Living with MS does not have to be the end of your world. I believe it’s about tweaking the time that we have to ensure we have the most awesome time possible in our story.

Thank you for taking the time to read my story!