Are you your disease?
My research looks at the first 35 weeks of my personal experience with breast cancer as I’ve documented it on this blog. A couple of the themes associated with my dissertation data analysis relate to learning about the disease and negotiating identity.
I think that this graph is particularly interesting:
When I look at this, I see that I did most of my identity negotiating in the early weeks – shortly after being told I had cancer. I’m pretty sure that I’d see a peak again later – but my analysis ends shortly after my major surgery, so I’m not dealing with all the post-treatment identity negotiation stuff.
What struck me as interesting here is that in the first few weeks after being told you have cancer you are also learning a lot about the disease. Your healthcare team spends a lot of time educating you about the medical aspects of the disease and the treatment options. You spend a lot of cognitive energy dealing with learning the medical stuff.
The only really emotional aspect that I remember my healthcare team talking about is that I’d need to learn to find a ‘new normal’. As a result, I’ve learned to hate the term ‘new normal’. I rebel against it every time I hear it.
But what about all the identity negotiation that comes along with identity. If your healthcare team is spending so much time talking about the disease, does this not give you the impression that your healthcare team think of you as the disease. Is that impression something that happens because at the time in which you are struggling with identity negotiation, your healthcare team are focusing almost entirely on teaching you about the disease itself?
I am now thinking, that once all the unimportant stuff in my life gets peeled away, the essence of who I am will rise to the surface. That has started now, and I expect that as the weeks progress I will find out more interesting things about who I am.
I’m struck the strong influence my doctors had over who I was, and how at the time when I was seeing a lot of doctors, that I was also questioning who I was, and what this diagnosis meant to me.
Am I my disease? No. But the disease did shape who I am today – there is no avoiding that.
It has me wondering though, what can we do in those early days to better support patients who are dealing with cognitive overload around learning all the medical stuff about the disease while they are also having to deal with all the emotional and mental work that goes into negotiating identity and how that identity is fundamentally impacted by the diagnosis? Is there an ideal time, when there is a pause in learning about the disease, where the identity would could be done – as a way to help smooth some of the waves and chaos at that time? What support do you wish you had at that time? What else could you have handled?