“because illness is an opportunity, though a dangerous one.” (p.1)
“to seize the opportunities offered by illness, we must live illness actively: we must think about it and talk about it, and some, like me, must write about it” (p.3)
I’m reading Arthur Frank’s At the will of the body: Reflections on illness. I’m only on chapter two but I’m finding so many wonderful quotes in his writing. The book speaks to both me as a blogger and my dissertation work. I must write about it. That writing is a compulsion. It is why I blog, because I must write.
Frank also talks about the medical view of illness versus the person who is experiencing the illness.
“’Objective’ talk about disease is always medical talk. Patients quickly learn to express themselves in these terms, but in using medical expressions bill purses lose themselves home: the body I experience cannot be reduced the body someone else measures” (Frank, 1991,p.12)
I particularly like the last part of that phrase – that my experience is something that cannot be measured. I actually used the terms quantified-self and qualified-self. It isn’t exactly the same idea, but in many cases it really is. The quantified-self is my measured ‘objective’ self. It is in many ways the medical record, the way in which my illness is captured in electronic records. The medical system works on the quantified-self, and I learn to use quantified-terms. My pain is given on a scale of 1 to 10, so is my mood. My ‘being’ is quantified for the purposes of medical treatment, and yet, from the beginning I have felt that there is something missing. There is that qualified experience of being ill that is not something that even belongs within the medical system.
“Illness is experience of living through the disease. If disease talk measures the body, illness talk tells of the fear and frustration of being inside a body that is breaking down” (p.13)
I speak to the fear and the breaking down of the body on a regular basis. These are key themes that appear throughout my blog. One might think that I had read this before blogging – so what came first, the blog or the reflection – but I didn’t. I am only reading this now and it is resonating with my experience.
“my questions end up being phrased in disease terms, but what I really want to know is had to live with illness” (p.14)
One of the questions that I look at relates to why patients read blogs. Frank talks to that desire here – when he expresses that as a patient what I really want to know is how to live with illness. Not how to treat the various side effects of being ill. I’m not looking for solutions that ‘fix’ the problem, rather, I’m more looking at ways in which to live – to survive – to be a person who is living with the illness and the threat of it returning at any moment.
“recognize that more is happening to you then you can discuss with those physicians in most medical settings. To talk about illness you must go elsewhere (p.15)
This is really something that I wish I understood a lot sooner. Physicians and healthcare providers only want a glimpse of what you are experiencing. They do not have the time to hear the whole story. They are are also ‘solvers’. When they hear you say something they feel the need to do something that helps ‘solve’ your problem, but you cannot solve experience. You need to learn to live with it – but also, the blogging community and the social media community became the places where I could express and discuss what was really happening. I could be my qualified-self in those spaces.
Rarely does an authors writing speak to me in the way that Arthur Frank’s writing does. I’m only on the second chapter of this book and yet, I am finding that it really speaks to my experience – it validates a lot of what I have gone through, but also a lot of why I think the work that I do is important. It matters. Not to change the healthcare system, but rather to help other survivors learn to live with illness.