I was diagnosed with relapsing remitting MS in 1995. By the time I got my diagnosis I was ‘well’ again and told to go and get on with my life! That diagnosis left me feeling pretty sick though, I couldn’t get MS out of my head and I definitely couldn’t get on with my life. Then I was diagnosed with hypothyroidism, and then familial hypercholesterolaemia (I ignored this for 10 years) I could have easily become anxious and depressed, I was fearful about my future and at times angry. I could easily have sought solace in cake, chocolate and Chardonnay. And indeed at times I did! I could easily have put weight on, become obese and developed Type 2 diabetes.
So what happened? It was 1997, I’d spent two years feeling ill when I wasn’t, then, I had a relapse! I couldn’t walk properly (these days that zig-zag stagger is my proper walk). I went to the GP expecting answers and solutions. I soon realised he didn’t have any after he asked me, “Do you think you might be having a relapse?”
I was stumped! He didn’t seem to know and I definitely didn’t know. It was a relapse and it began to dawn on me that the NHS didn’t know how to ‘fix’ me. The people around me didn’t understand, I felt very alone and lost. But I had shifted a bit because I was beginning to realise I had to change. Two more years passed, then, in 1999, I was in the right place at the right time.
I attended a Living Well course. It was actually the Stamford chronic disease self management programme later to become known as the expert patient programme. It didn’t make much of an impression on me straight away, that came later. I did however meet some other people who were in a similar position to me, living with a long-term health condition that didn’t have a cure and that clinicians didn’t seem to have any answers for. I met other people who were also struggling and I didn’t feel so alone. The course introduced me to some skills like distraction, positive self talk, how to communicate better with family and friends, action planning and problem-solving. These days we’d call that peer support!
I’m not like Paula, though I have met many people like her. Why am I different?