And, yes, the idea for the chest bursting alien came from a stomach ache he had.
I found this little nugget of wisdom on the Duncan Cross blog, which is full of trenchant thought about his illness – he has Crohn’s – and well worth a read.
In another post he makes an important contrast between ‘clinical’ knowledge with which doctors are prepared by their training, and the ‘social’ knowledge that people need to cope with Crohn’s and its broad impact on their life. Duncan gives clear voice to one of the insights that we have gained from our work: that Crohn’s drugs, like many other types, do nothing to help people cope with that broad impact on life caused by the residual symptoms.
That impact is “…economic, emotional, relational and political”; it is massively isolating, with a really profound psychological component that reaches into every area of life. The sad fact is that many of the clinicians do not have the social knowledge to help; they gain it slowly and vicariously through the lived experiences of the Crohn’s patients they see.
When you live with Crohn’s you develop real expertise in its management; some of that will be idiosyncratic, much of it could be of significant benefit to others. The other sad fact is that most of this social knowledge remains hidden, undervalued and never celebrated (in contrast to the clinical knowledge, which has a clear professional value).
Kate Lorig’s Expert Patient Programme was an attempt to reverse this structural deficit: people with many years’ experience of chronic illness help others just starting their lives with the illness. They share their insights into diet, toilets, work and intimacy, all those small but valuable ways of coping that you learn through living.
I think it’s a fundamentally great idea, although I’m not sure about the UK implementation. I could foresee design projects that would explore how you could be compatibly matched with someone, how really great expert patients could be celebrated and profiled, and how money or other forms of value could flow to make this sustainable. We’d start from the core idea that ‘social’ knowledge is every bit as valuable as the clinical.
Image source: Featured images