This blog comes from the reflections from a lecture I delivered earlier this week to medical students. I didn’t feel it went very well, and while reflecting on it on the train home, I wanted to blog to clarify my thoughts on it, and prove to myself (I hope) that I can be articulate and clear!
The sick role for patients can be comfortably uncomfortable – a safe haven of familiarity and predictability when our bodies can often feel the opposite. We create a narrative in our minds of how we are coping as best we can, that we should rest or do this that and the other...
Some of my reluctance about self-management in those early days came from how I understood it as something intrinsic to me that would challenge my intrinsic sick role. One part of my mind challenging the other part of my mind…
Self-management can at first seem to undermine the identity we create for ourselves when we’ve got a LTC. For me, that identity was that I have an incurable (but non-progressive) condition that means I need to various things to cope, can’t do various things, and that is that. My identity in those early days was build around the demands on my condition.
As I began my self-management journey and my confidence grew, I managed the burden of my conditions so the demands lightened, and the conditions stabilized. I was myself, through self-management, taking away everything that I used to define myself through my condition. The identity of those early years was not one I liked, but it was one I felt secure in, and one I felt I could hide behind.
For me, and from my experience of supporting people to self-manage, this is why it can be so hard to take those first steps. Rather than just asking us to increase our activation, what the system is asking us to do is to take off all our clothes without knowing what there is for us to change into.
The other aspect of self-management in relation to how I see myself has been challenged recently, by my old enemy, those pesky rose-tinted glasses.
Haunted by the ghost of my previous life (pre-illness), it is easy to find myself in the slightly ridiculous position of being jealous of things that if I’m really honest with myself, I didn’t always feel 100% sure about even when I was well.
I yearn for large social groups, and the physical activities I did back then, but the reality is that I never really felt that I totally fitted in, and as much as I did enjoy those activities, I also cherished weekend papers and quiet nights in. When I miss the other aspects, I am guilty of ignoring the part of me that hasn’t changed.
I often feel so distant from my pre-illness self, but there are so many threads of my old habits and preferences which haven’t been frayed by my health.
Comparing myself to others, thinking ‘oh if I wasn’t ill, I’d be doing that’ is understandable and human. But I need to remember that with some people, I’d never be doing what they are doing, even if I hadn’t been ill!
Self-management has meant the hidden threads of who I was are now central who I am – still me. But when you’ve worked so hard to re-tie those threads, the slightest question of them can be so painful.
Perhaps the hidden challenge of self-management is seeing your-self as who you are today, not coloured by yesterday or tomorrow.