Patient as Hero

Halfway through an inspirational talk at a conference, I began to feel uncomfortable.

As the eloquent speaker told a gut wrenching story of injury, despair, recovery and nationally recognised achievement, I became guilty about my unease.

She was a hero, no doubt about it. What she had achieved was extraordinary. With the help of an impressive medical team and her supportive family who never gave up on her, she came through. At one point, she said that she had faced a choice one day: to continue to wallow in self-pity or make the most of the life she had.

People were in tears. Emotional tweets were retweeted and favourited. And I left, puzzled about my reaction. And then I got it.

Patient as super-hero is the new myth. And it is dangerous.

I tweeted into the fray: ‘Not all patients can be heroes. For those with mental health problems, it is hard to ‘choose’ to change your life’. And a second: ‘Not all patients can be heroes. Please don’t use one person’s story to make assumptions about others’.

And I waited for the flak. I felt like I was the party pooper. And that maybe I was doing it just for the attention, because I wasn’t the one up on stage.

Mostly my tweets were ignored. But a few people sent me messages of support. One person sent me a DM (direct message) that others could not see. She thanked me as the talk had made her upset. She didn’t feel able to ‘live up’ to the heroism displayed on stage.

The event organisers had obviously wanted someone who was ‘inspiring’. But was this inspiration, in the sense of inspiring others to be like that? Certainly, many would have felt ‘there but for the grace of god, go I’ and that sort of gratitude is not to be derided. It can give you perspective. Certainly, some who were watching would have felt inspired to make more effort in their life, to go the extra mile. But there were definitely a few who felt paralysed. Comparing oneself to super-heroes is not healthy, in my opinion.

For those of us weaned on a culture of envy, where celebrity status is the pinnacle of achievement, the portrayal of patient as hero is unsettling.

I was bored rigid by my endless days of illness. Most illnesses are that and ten times more with the pain and suffering that comes with it. Heroism, if that is even the right word, consists of very daily, very mundane small feats. Nobody sees you. Nobody is aware of the daily struggle. I could tell that story. But it would put you to sleep.

My recovery was painful and constantly at risk. If by having ‘got through’ my personal hell, I can give back by way of support, then that is good. But I don’t think I did anything much beyond the boring stuff of staying alive. No standing ovations for that, the most resilient of all acts. In many ways I was simply fortunate. Three of my friends killed themselves. I was no more a hero than they were.

Stories of patient heroism can create assumptions amongst caregivers that ‘if only my patients were like that’. On the psychiatric ward I was often told to ‘cheer up’, constantly told to think myself ‘lucky’, to compare myself with others. In hindsight, I believe this was to alleviate professional discomfort.

Is ‘patient as super-hero’ set to replace ‘patient to be rescued’ as the modern medical narrative? This (coincidentally?) at a time when patients are expected to ‘take more responsibility’ for managing their conditions (as if they don’t already!). In a consumerist age, will it become the flip side of the curative reductionist model of medicine?

Whereas ‘patient to be pitied’ stories allow the audience a “brief illusion of empathy” (as the wonderful Carolyn Canfield calls it) patient as superhero reinforces an equal but opposite stereotype – one that still sees patient as ‘other’ and may even serve to prevent patient and professional sharing their vulnerability and common humanity. Striving (and maybe failing) to be a patient-hero, can be an additional burden. What double shame we have to bear if we are not able to ‘rise above it’ or ‘recover’.

Are patients or users unable to ‘get through’ going to be labelled ‘undeserving’ in a cash-strapped healthcare system? Maybe that’s far-fetched, but we have shades of that blame-game in discussions about obesity. In mental health, service users often live with the cultural myth of being ‘weak’. If others become heroes, their weakness is foregrounded further.

I had a nervous breakdown after years of trying to be a superman. The last thing I needed was reinforcement of the message to be tough. My guilt at not being able to wear that brittle armour any longer was a double trial. What has helped is being supported on the journey to self-acceptance. Warts, wobbles and all.

I am NOT saying that patients can’t be heroes. I am NOT saying that we shouldn’t be inspired by acts of courage and heroism.

I am saying let’s be careful of the stereotypes that conference organisers, improvement teams, trust boards and patients themselves can unwittingly create and reinforce.

Let us think carefully about the judicious use of story-telling and its various potential intentions and consequences.

More fundamentally, let us recognise the millions of everyday people in pain and the thousands of everyday actions taken to cope, the small steps – invisible. They are as heroic as those stepping on to the stage.

David Gilbert is a former mental health service user. He has 25 years experience of working with, and for patients. Amongst other things, he was Head of Patients and the Public at the Commission for Health Improvement, and Patient and Public Involvement Director at NHS Croydon. He has also worked at the Kings Fund, OPM and Consumer Association. He set up InHealth Associates seven years ago. He was co-founder of The Centre for Patient Leadership that originated the notion of patient leaders and patient leadership (with Mark Doughty), and was awarded ‘star leader’ status in the recent HSJ/NHS England Patient Leader Awards. He currently works part time as Patient Director, Sussex Musculoskeletal (MSK) Partnership – the first role of its kind in the NHS. David is a leading thinker and doer in the field of patient and public engagement and is a respected strategist, facilitator, researcher, trainer, writer, connector and communicator. He has worked with over a hundred local, national and international organisations to help develop effective ways that patients can be true partners in health and healthcare.

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