I’m currently reading Arthur Frank’s At the will of the body: Reflections on illness (1991). In it he recounts his experience as someone who has experienced a serious medical incident (heart attack caused by virus) and then a critical illness (cancer). He differentiates the experience based upon the idea of an intense but temporary interaction with illness versus a prolonged lifelong interaction with illness.
It occurred to me that this aligns nicely with the concept of visitors and residents within digital literacies. David White and Alison Le Cornu proposed a taxonomy for how people interact with web technology – known as visitors and residents. The idea is that for some technologies we are visitors – we use them peripherally or for short bursts of time, and for other technologies we are residents – we understand them in a way that only locals can understand.
I see a parallel with illness. When you experience a temporary illness, you are a visitor to the healthcare system – in some ways it is like the difference between being a tourist and being a local. As a visitor you experience the system peripherally. You may take a few tours and try to understand what is happening, but your understanding is still at the level of a visitor. When you leave you have a memory of the experience, but the experience is over. You are not living it every day. Where chronic illness is different. If your illness is something that stays with you for the rest of your life, you learn to live with it. You live and breath the experience. You cannot leave it. You are a resident in the system. You learn the inner workings of the system in a way that only someone who lives it can understand.
This analogy can be taken a step further. We can see the healthcare system as something that provides service to the residents – the politicians and the government services. These are necessary for the community to thrive, but also directly impact the lives of those who live in the community. When the service providers lose sight of the impact of their services on the community, we seek to replace them – we elect different politicians that we believe will better understand what it means to be a resident in the community. OK – I think that aspect might be a bit of a stretch.
I have written before on how I despise the language of “everyone is a patient” as it really just serves to silence those who have critical illness experience with the system. It treats those with temporary illness the same as those with critical illness. It is like saying that because at some time in your life you will visit a town, that makes you a resident of the town. Except it doesn’t. Visiting only gives you a peripheral understanding of what it might mean to live there – it does not give you the detailed understanding of life in the town, with all its complexities.
What I like about the parallel to the analogy is that it demonstrates how we are residents in some part of the system (e.g. I’m a resident in breast cancer land) but a visitor in others (e.g. when I have a tooth ache and need acute treatment). I am not a resident in the world of dental disease, I’m just a visitor who will temporarily interact with the community before moving on with my life. In breast cancer land, my intense experiences with the system, and living with the disease, makes me a resident. I will remain a resident for the rest of my life (or at least for the next 10 years, then I’ll be someone who visits on a regular basis and still understands what it has meant to really live there).
I find myself wondering if it is more like a prison – where critical illness means you are incarcerated for life, never able to leave. But then I think of what Arthur Frank refers to as “illness as opportunity”. It is through illness that at least some of us learn to live our lives. So, it isn’t so much about being imprisoned by the illness, so much as living in it every day. We can still go on vacation – pretending that we do not live in the town for at least a short period of time, but we still return home. At the end of the day, our illness is our home, and not something that we can cast aside as if we had only visited for short time.
What do you think? Does the parallel make any sense to you?