Angela is a child therapist, but talking to her daughters about her MS was still a challenge.
I work as a counsellor in primary schools. I first started noticing something was wrong during the school holidays two years ago. I was unbelievably tired – and it didn’t get better, no matter how much I rested.
Over the next few weeks, my face went numb, and my balance was all over the place. My legs became so weak, I would stumble and fall when I went out.
Coming to terms with my MS diagnosis
I went to the GP, and was referred to hospital, where I was admitted. Two days, an MRI and a lumbar puncture later, I was diagnosed with MS.
I knew I needed to tell my daughters, who were 10 and 14 at the time. But I was still getting my head around the diagnosis. I remember being in hospital, crying, thinking ‘How am I going to tell the girls?’ I support children emotionally for a living, but it was still hard.
Avoiding information overload
My husband and I decided to wait a day or two, until I was back home and settled. Then we sat the girls down and told them the news.
We kept it simple, just telling them the basics about what MS is. We didn’t want to frighten them with lots of information. We warned them against googling MS, because we knew they might find some scary stories online. We showed them some good websites, like the MS Society and the MS Trust.
We talked a lot about the uncertainty – how we didn’t know if or when I would have another relapse, or if I would be permanently disabled. We decided we had to focus on managing things now, and not think too much about the future.
Sharing our experiences of MS
We’ve always been an organised family, planning trips and holidays in advance. Now we have to be more spontaneous and flexible.
I’ve recovered enough to go back to work part time. I work in the mornings, and keep my afternoons free in case I’m fatigued. It gives me a chance to recharge before the girls come home from school.
I’ve written a book, based on our experience, to help families talk about MS. It’s a story that takes you through diagnosis, treatment and how MS affects the whole family. I hope that by creating characters that parents and children can identify with, they’ll find it easier to talk about their own experiences.
Angela was diagnosed with MS in 2015. She lives near Cambridge with her husband and two daughters.