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Soo Lyon-Milne

Making connections


I was diagnosed with secondary progressive MS in 2016, but my neurologist believes I may have had it for quite a few years already.

In 2010 I thought I’d had a stroke. The doctors found lesions on my brain, but they believed it was an isolated incident. I kept asking myself ‘could it be a tumour or the start of Parkinson’s?

When I was told I had MS I actually felt some relief as I considered this somewhat manageable compared to my earliest and biggest fears.

I was in denial

In 2017 I was feeling very low. Over the months leading up to my SPMS diagnosis, I’d felt like I’d been falling and falling hard. Being diagnosed with a progressive condition is a lonely business because however supportive and sympathetic people are, no-one can truly understand, nor help you deal with what you’re facing.

The first 3 months after my initial diagnosis, I was in complete denial. I treated it like it was a severe case of the flu or a virus, something I’d get over in a few months and resume life as normal.

MS hasn’t changed the real me

I'd post on social media about how I wasn't going to let MS define me, I wasn't going to let it change me, and that I was going to WIN! However, whilst I’d be waxing lyrical about staying positive, I was in fact slowly falling into a deep, deep depression.

I continued to struggle, sometimes spending hours, and almost every day crying in a helpless heap. Then one day it just hit me - I haven't really changed.

I'm still creative, I still like the same music, still laugh at the same jokes, still love meeting up with friends. It's just how I approach things which has to change, that's all.

I'm not sure I’ll ever get used to having MS, but I think I have finally reached a point where I’m ready to work with it. I'm ready to start living again. Keeping active I now go to a gym 3 days a week. I’ve found going to the gym invaluable, it gets me out of the house, and it’s so good for improving mental health. I have trouble standing as my legs are numb a lot of the time but I use the dumbbells for my arms – I’ve actually got rid of my bingo wings!

Finding support online really helped

When I was diagnosed I visited the MS Society website and community forum as I didn’t know too much about MS. It was very helpful as there was lots of advice available. For the first year, I logged on every day for a good few hours and I’d ask a lot of questions. It really helped me to understand what MS was and I’ve gone on to recommend it to other people as I found the site really useful.

I know a lot of people avoid going online and asking questions as they think it will be scary and negative but it’s actually very positive.

Making connections

MS Connections was a photography exhibition which told the story of how three in five people with MS feel lonely because of their condition. I feel so proud to have been involved with it and loved every single moment. Read more about the MS Connections project.

The whole campaign lifted my confidence so much. I’ve always felt a little self-conscious when in my wheelchair. But after seeing the photos from the event I just feel a huge sense of pride.

Soo lives with her partner Dave and son Charlie.

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