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.

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30 thoughts on “Patient as Hero

  1. Thank you for this – for voicing my feelings and disquiet about the empathy industry. I owe you a great deal, and for the poetry.

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  2. This needed to be said. Thank you for writing and sharing this. Some patients out there, and some of their healthcare pros, are hurting other patients. Some knowingly, some unintentionally, but it’s happening.

    This hero status and myth also prevents true supportive networks from forming. If one or select few patients are held up as the *standard* for an illness or disease, many other valuable contributions are not heard and sometimes outright ignored. In my experience, it is the quiet contributions which are the most helpful and genuine. But those are often the voices left alone in their struggle and daily life. It’s so frustrating for me to be in this pattern and worse to witness it. I’ve reclaimed my independence from my situation and much better for it.

    I’m very grateful you’ve spoken up and so well about this. It’s overdue and necessary. Thank you,

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    1. Good points. The emergence of supportive networks is one of the best things to come through via social media. Let’s continue highlighting those ‘quiet contributions’. Thank you

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  3. I left a comment but WP asked me login and I think it was lost.

    anyway, short comment – Thank you. Well said, needed to be said. I am grateful to you for starting this conversation and hope it continues. Safely, with respect for all, but it does need to continue.

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  4. All patients could potentially be ‘heroes’ if they had an impressive medical team and supporting family who never gives up on them but for the majority of people requiring help for lifelong conditions they don’t have either of these let alone both but continue to survive nonetheless due to their own resilience, which is basically a stubborn refusal to allow their lifelong condition to control their life …. nothing inspiring to convey to a Conference audience perhaps but Heroes still the same.

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  5. Sadly the nature of Conferences is to tell it like it could be, rather than how it is. Can’t think of one Conference I’ve attended that’s actually made a difference in practical terms to the way healthcare is delivered or received. What is uncomfortable about Conferences is the amount of resources used in putting them on, when those same resources could be used for better purpose.

    As for ‘patient heroes’, not everyone has an inspiring story to convey to an audience, much the same as everyone doesn’t have an impressive medical team or family who never gives up on them – but surely all patients are ‘Heroes’ because of their resilience in not allowing lifelong conditions to control their lives.

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  6. Spot on. I went to a Cancer Taskforce workshop recently where the future management of cancer was discussed (no patients in the room) and was all about self management from day one. A cancer diagnosis even a good prognosis one is something most people still greet with a paralysis or terror. When does self management just become abandonment? Not everyone gets the “impressive medical team” some people need advocacy and a lot need psychosocial support at a vulnerable time. Illness is hard work and we need to accept that.

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    1. Thanks, great point about the potential for self-management to become a form of abandonment. The good clinicians won’t let that be so, I hope. But, just as the voluntary sector can become seen as cheap providers and replacements for the State (in this country), so this may be a mirror?

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  7. Just using the vocabulary of hero, heroism no matter how well intentioned is part of the process of ‘militarising’ illness – always a ‘battle’ to be won, a ‘fight’ to ‘defeat the enemy’ etc – supply your own

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  8. David, thanks so much for putting into words what has been niggling around in my gut, too. Reading your essay, I was immediately reminded of my friends living with metastatic breast cancer – you know, the sick ones who are NEVER invited to speak onstage at any of those pinkified conferences/fundraising events “for the cure”. For those, organizers only want the brave, bubbly and inspirational heroic types who have “beaten” their diagnosis. But how are these women onstage braver than those who have struggled every bit as valiantly against this disease but have now been deemed, unlike the “real” heroes onstage, to have lost their battles?

    The late Jessie Gruman once wrote this about her own challenges as a patient living with multiple serious illnesses:

    “The belief is that sickness ennobles us; that there is good to be found in the experience of illness; while diseases are bad, they teach life lessons that are good – but this belief can inadvertently hurt sick people and those who love them.”

    I wrote a variation about the discomfort so often felt around this theme in: “Does Surviving a Heart Attack Make You a Better Person?” http://myheartsisters.org/2011/09/30/surviving-heart-attack-make-you-a-better-person/

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  9. PS – David, WordPress has a ‘Follow Blog’ widget (under ‘Appearance’ on your WP Admin pulldown) that would allow subscribers to be notified by email about each new post you write. Please install this widget so I can keep up with you!

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  10. Wonderful essay! Thank you.

    In my fieldwork among patients and caregivers, I met so many people I viewed as extraordinary that I had trouble finding adjectives and other ways to accurately describe them to colleagues and readers of my work. I used the shortcut of “hero” and even “superhero” until one day when I was brought up short by a rare-disease mom who said, essentially, No, that isn’t accurate. We are not heroes. We are regular people doing the best we can, the way you do — or the way you would if you faced a situation like the one we are in. Don’t put me on a pedestal, she said. I don’t want to be there.

    Your closing statements are, to me, the most powerful and important:

    “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.”

    It’s one reason why I value survey data, like the kind I used to collect when I worked at the Pew Research Center. We need to measure the hills AND the valleys, the light AND the dark, the places that are visible AND invisible to mainstream media and conference organizers. No knock against the speakers who are able to get up on stage, btw, but let’s not forget those who cannot.

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    1. Thanks for that comment. It reminds me of a wise friend who said to me: ‘You are stronger than you think you are. But not in the way you think you are’. I am left still pondering that one! People seem mixed in their comments below as to whether to think of people’s struggles with suffering as ‘everyday heroism’ or want another phrase. There may be a difference too between ‘being a hero’ (noun) and being ‘heroic’ (adjective). Maybe the semantics don’t matter, so much as the acknowledgement of those (extra)ordinary struggles.

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  11. Great new Blog as a follow up to your Twitter comments on the day of the conference. I find it’s a hard balance to strike with other people if they ask how I am as I’m in pain all the time and feel tired all the time from my physical problems which is sometime overlaid with episodes of depression.

    I tend to say I’m fine if I’m functioning, dressed and can get out and only comment if something is badly wrong and it is stopping me doing something. But I just wish people could get that I get ‘beyond tired’ really quickly and no amount of pushing through or positive thoughts will help as if I carry on I end up in bed for a few days.

    But like you said explaining what happens day to day would bore people rigid and I’ve had about 20 years of this and there’s more to come!

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  12. I’m one of those people who has spoken on a podium to people at the wrong time and got their state wrong. I’ve appeared in a talk like I was some kind of patient hero and then been surprised when half the room seemed to hate my talk. I learnt a lot by it. My talk wasn’t ” hey look what I’ve achieved” at all. Infact it was, so I thought a very honest journey about grief and depression and anger and challenging behaviour and fear….and then a lucky break, followed by more fear, joy, gratitude and back to anger and depression again in cycles and eventually a journey into normality. I did it because when I was first diagnosed all I wanted was for someone to give me hope that everything could possibly be normal again one day. I sought out people who seemed “healthy”, “happy” and very much “alive” contributing to society and with a future who had been through what I was going through. So I thought I could be that hope for others. However it back fired. Half of the patients were inspired and felt hopeful, the others felt “hoorah for you but I’m going through this right now and you’re not.” That was their experience on their journey wherever it took them. As with any other talk there will be people who resonate and those who don’t. I guess the key is to fill a need to hear a story of hope that might be there but verbally recognise that we’re all at different places and all our journeys are different. Just as the definition of “well” means different things to different people at different times, being a “hero” can just mean “I managed to get out of bed one day last week just as much as it can mean running a marathon.

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    1. Thank you for your honesty. It’s hard. I think I may well have done the same a few times. I need to reflect carefully on what you have said and be as conscious as I can be when presenting.

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  13. David, really agree with you and it is something that needs emphasising more often.
    Well said for the many who just get up each day and carry on regardless.

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  14. I agree so totally (is the so necessary there?) Similar thing needs written for ‘caring’ which is endless boring do it over again and again. Yet it is done. Yet is is. Thank you.

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  15. I wrote a blog post once about my own experiences, called “From inspiration to scrounger”.
    You see, in the earlier days of my illness and disability I was labelled as one of these inspirational “heroes”. Although I was very ill and with increasing disability, I managed to accomplish some pretty impressive things career wise. The thing is, I had no control over the labels people gave me, even when I fought it.

    For instance I remember a colleague commenting how much she admired me and “when she thought about all those people on disability benefits when I pushed myself like this, WELL…”
    I angrily pointed out that one day I would be one of “those people” (my illness is progressive). Would she then despise me? “Those people” might be pushing themselves just as hard as me, except with no recognition. But I don’t think she really got it. I just got platitudes about not giving up.

    Today I am indeed on disability benefits. No longer an “inspiration”, I am often seen and treated as a “scrounger”. Yet nothing fundamental has changed. I am still me. I have the same support network, doctors and, just importantly, same drive and attitude. For all that, I fight to get out of bed and am delighted if I leave the house.

    I think it is worth remembering that it is hard to control what labels we are given. Dont blame people for being called inspirational.
    It is also worth remember that the “scrounger” may be working just as hard and have just as good an “attitude” as the “inspiration”. The difference is the former gets no recognition and little social support.

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    1. Wise words. Thank you. I do not blame anyone for the effect they have on an audience. One cannot have complete control. That itself would be ‘super-human’.

      I am more asking for audiences (and readers) to avoid making assumptions about others who may not have the stage at their command. I also think that those who are on stage – as many do, and as you did – could draw more attention to those that aren’t.

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  16. I’ve only just seen your blog …… it communicates a really important point about not replacing ‘patient to be rescued’ with ‘patient as super-hero’ for all the reasons you suggest. Very well said!

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