“You learn what works for your multiple sclerosis”

Joanne recounts her MS diagnosis and transition to secondary progressive MS.

My diagnosis news was a shock. I felt relief to know I wasn’t going mad or had another condition. I was finally given the keys to get out of limbo land.

To quote the parable, “give a man a fishing rod, not a fish” – you learn what works for your multiple sclerosis (MS). You and loved ones have to learn to accept that you will have good days and bad days. And remember life throws in curve balls.

When I was diagnosed, my busy life and having what I know now, meant constantly feeling like a fat hamster in a wheel not going very fast. When I got re-diagnosed, it still had that feeling but I felt I’d been hit round the face with a wet fish (that parable analogy again!). Not a nice feeling but the affirmation I needed.

Firmly believing ‘knowledge is power’, I read lots before and during my diagnosis which helped me learn and accept. The key difference from being diagnosed to re-diagnosed was to be kind to myself and only visit proper sources, like the MS-UK Choices Booklets, New Pathways magazine, or website. Also, my re-diagnosis happened not long before Covid struck, so we were constantly bombarded with ‘look after’ messages. I was conscious to look after me and my family. This meant reading up on what life having secondary progressive MS meant. Going to official sources was my self-preservation, when I was re-diagnosed or when I have a new symptom or progression.

Remembering MS is a lifelong condition and knowing what helps is key for your daily learning process. I knew I wanted to feel good on the bad days, so got a great dressing gown.

For every MS consultation, I’ve had a chaperone, so the news wasn’t communicated solely to me. Having my husband there allowed him to ask questions and he later communicated to the wider family. Remember, you might have MS, but it affects the whole family.

Being re-diagnosed was a shock but I learnt from my diagnosis. I wasn’t going to be that hamster in a wheel, I knew I had to be more conscious of mine and loved one’s feelings. So aside from reading, I gained knowledge and offloaded by talking, whether it was with MS medical professionals, other people with MS, or loved ones. I also had counselling.

My re-diagnosis journey like my diagnosis was unexpected but despite the emotional blow, I was better prepared. Remember, ‘knowledge is power’.