MS & Me

This blog title gives me anxiety. What does a “better me” mean? Should I be writing an article like the many I’ve seen where people tell stories about how better their life is since MS diagnosis and how much they have achieved? People climbing mountains or running marathons? I have read a lot where people seem grateful for MS. I’m happy for them but let's get one thing straight from the start - I am not grateful for my diagnosis. MS has in no way improved my life. It sucks and any of the positive things that have come from it, like my learning mindfulness and becoming a calmer person, I like to think I would have discovered in time anyway. 

'The wind beneath my wings’: MS & Me Guest Blog Yvonne McBennett as part of World MS Day Campaign 'My Diagnosis' shares her personal story of being diagnosed with MS, the initial shock and the impact on her life and her family. Through her resilience and the support of MS Ireland, she discovers a sense of belonging. 

To mark World MS Day, we launched a letter-writing initiative, supported by Novartis, to provide a platform for those living with MS to share their unique diagnosis stories. We are kick starting this campaign by sharing six powerful letters, written by members of the MS community. 

My name is Stefan I'm 32 and live in London. I was diagnosed with MS in 2017. I am a teacher, a poet and a huge swimmer. I hope you enjoy this poem and also hope that you know that you are not by yourself in dealing with MS. I wrote this poem because my friend thought it would be a good idea and that it would help me. He was right and now I want to share my experiences with you. Always remember you are not alone! Enjoy the poem. 

In 2016, Aoife Kirwan wrote a blog about disclosing her MS. Today, she looks back on whether she still feels the same way or not.

Regular readers of MS and Me will have previously learned about my recent switch from Copaxone to Tysabri and all of the upheaval that it brought to my life. While I feel very fortunate to be able to access a second- line treatment, it encompasses a new set of side effects and concerns.

Once the initial shock of an MS diagnosis has lessened somewhat, I think everyone begins to realise that MS is not just a physical journey; it’s a profound mental and emotional voyage that affects nearly 2.8 million people worldwide. This chronic, often disabling disease of the central nervous system has a notorious unpredictability, making its impact on mental health as significant as its physical impacts. 

Often people ask me what I do all day given that I don’t have a full-time job anymore. I assume the question is coming from a positive place - that there is a genuine interest in how many chronically ill people spend their days. If we don’t talk about these things, then we miss the chance to clear up any misconceptions.

Ten years ago, while waiting for a neurology appointment at Beaumont Hospital, I wrote a heart-wrenching blog post about the unpredictability and unfairness of having multiple sclerosis. Next month, I will go back to the scene of the crime - and in the same month I received my diagnosis, no less.

Trevis Gleason’s new book, Living Well with Multiple Sclerosis, edited by Emma Rogan, is now available internationally.