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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.

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This is mask territory, take care.

Finding myself on the other side now

I lift one from the box and wear it,

my patient face muffled in stuffy fabric.

Your full name and date of birth, please

is confirmed with several heads

seated behind plastic screens

at a succession of counters,

then I take the clipboard of questions

that want numbers rather than stories

– tick the boxes, vote for yes or no –

to wait among the subdued and patient.

The ticky-click of crutches passes,

then a lumbering moonboot,

an old hunch pushing a frame

but for most, the need is less scrutable

as we’re channelled along an assembly line –

through the cold efficiency of x-ray

next a focused surgeon’s assessment

blood tests with a tech from Macedonia

and a shy student nurse taking measurements

then upstairs to strip for an ECG

where an angel hovers over my pale

chest with her little sticky post-it tabs.

Fully processed, I emerge from the overheated

clinic to reward myself with coffee,

having secured a spot on a waiting list

in an ever hopeful elastic queue.

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The door swung hard shut

and with the day a blank sheet

I let my feet take me just

where, which was up at first

to climb above the cold shade

finding snaking Salamanca

infused with fumes of buses

and bustles of students

so I left the road and strode

across campus, feigning familiarity

with this strange university

then through to Kelburn

and the Upland Road.

Striding easy, I planned

to return via Aro Valley

but instead surrendered

to the pull of the bush gully

down my right, quiet but

for an unseen stream

and the sweet creaks and gongs

of an unhinged tūī.

Following damp gravel tracks

around the contours of deep shade

I lost the arc in my mind

and suddenly stumbling into light

was perplexed to find

where the willful poem had led.

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