The show must go on

Wed 08 May 2024

Monica Dillon

Monica was diagnosed with MS five years ago. She looks back at what it was like telling people about her diagnosis. And talks about what’s changed since then.

At the end of my previous blog, I had my diagnosis of MS. There I was, my head going a mile a minute with so many questions and things to organise. I had to make a lot of phone calls, sort out appointments with the MS nurses and oh yeah, think about my treatment options. 

But the biggest thing I had to worry about was telling people. Not just my family, but my friends and people I worked with. 

Telling people about my MS diagnosis

My parents were incredibly supportive, as they have always been. So that set me up believing that everyone would be as kind and understanding. Unfortunately, that didn’t turn out exactly as I first thought.

Telling people was hard for me. I hadn’t come to terms with it myself. But I knew I had to make everyone around me aware of my condition so they knew what to expect. And would understand if I needed any extra help.

Read more about talking to friends and family about MS

Struggling with people’s misconceptions about MS

At first, people didn’t know what to say. It was like I was telling them I’d grown an extra head, or been given a death sentence. Then I got ‘those’ comments. From people with misconceptions about MS - or just a lack of understanding. Comments like: "if you change your diet, you can cure your MS".  Or: "I know someone with MS, they’re in a wheelchair now". Or: "I’m not going to walk with you if you’re using a walking stick". Needless to say, this didn’t help with my own mental health. 

I started to spiral. I stopped mentioning my MS until I knew how to carry on with things myself.

I thought: "if this is people’s attitudes to this condition, then how can I cope with it?" I tried to get on with things as best as I could, not having the highest opinion of myself. Because now that I had a condition people didn’t understand, I felt like people didn’t understand me.

Read more about MS and mental health

The kind words that changed everything

Then, while I was working away on my own, everything changed. I was trying my best to focus on what I was doing while my head felt like it was full of cotton wool. Questions I couldn’t answer, and people’s comments and reactions about my MS, circled round my mind. While I was having an internal argument with myself, I was interrupted by a fellow colleague: "hey, I just heard about your diagnosis, and I wanted to see how you are doing".

The cotton wool lifted. The negative comments quietened.

There was someone who I didn’t know too well at that point taking time out of their day to come and check on me. I was (and still am) so touched. That one person doing this changed my attitude from that point on.

Growing in confidence

So here I am five years later with a completely different outlook. I’m more than happy to talk about my MS if anyone wants to know. I’m also happy to answer any questions about it with confidence and a positive attitude if anyone asks. Yes, I have this condition and there are days I struggle physically and mentally. But I think of the support network I have around me and the kindness that has been shown to me and consider myself incredibly lucky to have it.

MS doesn’t give the complete picture of me. It’s taken me time to get to this point, but with the help and support of the people around me I can carry on and remember who I am. As Queen and Freddie Mercury say: ‘the show must go on’.