I could have been Paula

This blog was written by Lynne Craven, who took part in our first webinar of 2020, which explored a clinical case of a person known as ‘Paula’. 

I joined the Rethinking Medicine webinar on Monday, not because I am a clinician, rather because I am an interested patient. I heard the story about Paula and I can’t stop thinking about her and thinking that I could have been like Paula.

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.
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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?

Getting control

I went on to train as a volunteer deliverer for the expert patient programme in 2003 and that’s when I began to learn about self-management, that’s when I began to get some control in my life. I was developing my knowledge, skills and confidence to self-manage by showing others how to do it.

I’m not like Paula, though I have met many people like her. Why am I different? I think I have accepted that I live with a long-term condition that cannot be cured by medicine, the other two can, but only if I engage and do my bit. I have a role to play in managing the impact MS has on my life. I can’t do it alone, I need the support of family, friends and a variety of clinicians. I have re-thought my role as a patient, I am no longer passive, expecting the NHS and its workforce to cure me. I now know I have a huge, important role to play, when it comes to managing my health and wellbeing. It was my peers who showed me this was possible and gave me hope.

I don’t expect to be fixed anymore, however I do expect to be supported and treated as an equal partner in my care. ​