Illness as transformative experience
We rate states of poor health or disability differently, depending on whether we’re in that state or imagining what it might be like. According to a Perspectives article on illness as transformative experience in The Lancet, people with serious health conditions consistently rate their wellbeing higher than healthy controls who were asked to imagine what living in a particular health state would be like.
So, sighted people think that living with blindness would be worse than blind people think it is. Going through chemotherapy is usually unpleasant, often ghastly, but those in good health assume it would be even worse than people who experience it for themselves tend to rate it.
Julia Darling was an English novelist and poet. She wrote this poem from her own experience.
I did not imagine being bald
at forty-four. I didn’t have a plan.
Perhaps a scar or two from growing old,
hot flushes. I’d sit fluttering a fan.
But I am bald, and hardly ever walk
by day, I’m the invalid of these rooms,
stirring soups, awake in the half dark,
not answering the phone when it rings.
I never thought that life could get this small,
that I could care so much about a cup,
the taste of tea, the texture of a shawl,
and whether or not I should get up.
I’m not unhappy, I have learnt to drift
and sip. The smallest things are gifts.
This is a very personal poem, in which Julia Darling shares with her readers an album of pictures that convey insight into what her daily life has become. Losing her hair, hot flushes, hardly ever walking by day, lying awake in the half dark – good poetry frequently relies on concrete images like these to do the work. Abstract expressions, such as unpleasant and ghastly, as I used in my opening sentences, become generic and miss the impact of individual experience.
Poetry aligns well with patient-centred medicine, exploring the way a particular patient experiences illness rather than the broad umbrella of a diagnostic label.
There is a pivot midway through this poem, where the narrator begins to share how important the taste of tea and the texture of a shawl have become, ushering in the final couplet with its surprising declaration that she is not unhappy. These small things are now appreciated as gifts.
Showing interest and taking the time to listen to how a patient is really experiencing their illness journey, may uncover a more nuanced weave of negative and positive than we often assume.
Reference: Carel, Kidd and Pettigrew. The Lancet, vol 388, 17 September 2016.