Carol Pearson is a retired chartered accountant. When her full-time career was cut short by complications from severe endometriosis, she had to re-create herself and she now works as an audit chair for NHS Crawley Clinical Commissioning Group. Carol helps as a research assistant at Royal Surrey County Hospital, is a trustee for Endometriosis UK and co-leads endometriosis support groups in Brighton and Guildford. In 2013, Carol shared her story in a talk entitled ‘Rewriting Red Riding Hood’ at TEDxBrighton.
I’ll come clean about this – I don’t particularly like the term ‘self management’. Every day as adults, we have to manage all aspects of our lives – our jobs, families, homes and finances. Why should our health be any different? Because somehow, it is easy to forget that we need to take responsibility for that most precious resource – our own physical and mental well-being.
I am as guilty of this as the next person. As I sit here and write this, I am suffering from an utter failure in self-management. I took my nieces and nephew to a trampoline park and decided to join them. Was this wise, after numerous bladder surgeries and complications? Most definitely not!
If you live with a health condition for any length of time, you get to understand it and how it affects your body – you develop insight into things you can do to manage it as well as possible. For me, this is diet to deal with the after effects of bowel and bladder surgery, exercise to manage pain and swelling and (frustratingly) rest. This is a fine balance that very easily gets out of kilter if I don’t respect my body.
But actually, I find my most enduring challenge is about what disease has taken from my life. Do I think about being a catheter user or wearing thick compression stockings to manage lymphoedema? Not a lot – but I desperately miss my career, I haven’t had a relationship for many years and I shall spend a lifetime wondering what my children may have been like. My solution to this? I head to the art studio.
Managing illness can also mean talking to others about it – those going through similar things, who ‘get it’ without needing lengthy explanations. Who else can I talk to about painful sex and what it means to live without part of your bowel? In fact that’s a story I shared – I’m not a fan of taboos, as you can see in my TED Talk.
But by far the most crucial part of my own long term condition has been giving something back. I didn’t realise how important it would be to take an active part as a trustee of Endometriosis UK, or how passionate I would feel about running support groups and advocating for other women during their hard times. I didn’t realise, when I took medical retirement, that I would be involved in the wider NHS context, as lay member for governance on Crawley Clinical Commissioning group, as chair of my local GP surgery patient participation group and also as a volunteer researcher for the surgical team who spent so much time trying to fix my body. In this way, the hard times have opened doors I didn’t even know were there.
As patients, we have spent too long being passive recipients of care. Exit stage left for the paternalistic model of healthcare, patient empowerment is now centre stage. In order for us to get the best out of the NHS, actually to enable it to be sustainable in the longer term, we need to work with the clinicians, the managers, our local populations and the voluntary sector. It’s about working in partnership. We need to work on prevention – to tackle obesity and smoking. And we need to seize self-management, despite the terminology, with both hands.