Friday 20 September 2019

Dr Ciara Kelly: Humbled by how little I know of patients' lives

Dr Ciara Kelly: 'I had no clue of the impact on every aspect of these people's lives'
Dr Ciara Kelly: 'I had no clue of the impact on every aspect of these people's lives'

I was at a patient journey day last week. These are the kind of things you go to as a doctor, like a big conference where you listen to patients describe how they got on and how they coped with various illnesses they've been suffering from. They are usually nice days. A break from clinical practice with a dollop of medical education thrown in. I quite like them. Last week the one I was at was on Psoriasis and Hidradenitis Suppurativa (HS). Dermatological conditions. One causes a rash with scaly plaques and the other a series of recurrent abscesses. They are nuisance kind of conditions really - I thought to myself - nothing as bad as some things you might have.

I'm so glad I went because it was a genuinely humbling experience, as a doctor, to be shown - despite all you know - how wholly lacking in insight you actually are into patients' real lives.

A woman with psoriasis since childhood, spoke about a lifetime of living with the disease.

It developed after she was in a road traffic accident that her four-year-old self blamed herself for causing, because she had made her daddy bring her on a drive, when he hadn't wanted to because it was late. She spent years covered with a scaly, itchy, painful rash that people pointed at and commented on. She put on huge weight. At her heaviest she was 20 stone. She developed chronic hip pain. Her doctors told her it was because she was fat.

It took eight years for the severe psoriatic arthritis in her hips to be actually diagnosed with an x-ray and treated with bilateral hip replacements.

In the meantime, she'd years of crawling up the stairs at home and sliding down them on her bum because she couldn't walk. Her own four-year-old daughter had to put on her socks and shoes for her, as she couldn't bend to do it.

The one thing she could do - which was swimming, was taken from her when a woman in the changing room of her local pool made a loud, deliberate phone call in front of her, saying it was disgusting she had to swim in a pool with a woman riddled with ringworm.

She said if anyone ever even touched her arm in passing - she felt like crying with gratitude that they weren't repelled by her and hadn't physically recoiled.

A man spoke about his HS. The chronic scarring boils that appeared in clusters upon clusters on his buttocks, groin and armpits that affected his every movement, his ability to work and put all hope of ever being able to be physically intimate with someone, right out of his head.

He spent his 20s and 30s struggling to move and in a kind of lonely isolation, trying to make himself invisible to everyone.

I sat there ashamed. These weren't nuisance conditions. I had no real concept of what they meant for people. I may have known the symptoms. I may have even known the treatments. But I had no clue about the impact on every aspect of these people's lives, their daily pain, both physical and psychological. I realised that despite years and years of medical experience I still know nothing worth knowing, in many ways.

It was a really good experience as a doctor. Sitting there just listening for once. Not trying to fix things. Not jumping in with advice. Just listening. I did feel a sense of humility - that I could have worked for so long, with patients with these conditions, think I understood them and still miss the most important bits - how they made people feel. Turns out, to paraphrase Game of Thrones. 'You know nothing Ciara Kelly'. But I am hoping maybe better late than never.

Yesterday was World Psoriasis Day.

@ciarakellydoc

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