How Real Can You Be? (Or: the director who cried in the toilet)

How Real Can You Be? (Or: the director who cried in the toilet)

Tough Nut

Can you be you? The real you? At work and at home. With your family, friends and work colleagues. Able to reveal your uncertainty and emotion, yet be effective.

I had a great nurse on the pyschiatric ward, who went out of her way to support and encourage all of us. She was kind, gentle and real. On re-admission, she had gone. I was told that she found the ward environment too stressful. She had been ‘too open’ they said.

Over the years, I noticed that empathic staff were few and far between – the good ones seemed to have burnt out. Those left were ‘custodians’, stocky well-built figures with bulging arms who seemed physically and emotionally armoured to distance themselves from the emotions around them. How else could they cope? Being real meant being destroyed.

A friend’s wife is an A&E nurse. She knows within an hour whether a student nurse will crumble before the trauma they see on the ward, or whether they will steel themselves and become ‘tough nuts’. She wants neither. Somewhere in the middle, she says, is the successful nurse who can empathise rather than sympathise, who can treat patients as adult and not cry with them.

Flaky 

I know two other directors struggling with stress of work, and around how open they can be about their feelings, in case their legitimacy is threatened. One worried about being seen as ‘flaky’.

A couple of weeks ago, I had an emotional outburst at work. I was overwhelmed by a particular issue and I did not understand what I needed to do. I could not process the language that was being used by others (about systems and processes) and was increasingly flustered. I felt between a rock and several hard places. My brain was fizzing with anxiety and loops of repetitive thoughts along the lines that I was hopeless – very resonant of my mental health experiences many years ago.

I stopped being able to hear the explanations that were being provided and all I wanted to do was shut down. This was in an open plan office and had come after a couple of week’s heavy stress and lack of sleep. I walked out. I said: ‘I thought I was good at what I do. Maybe I’m not’. And went to cry in the toilet. The fears came – what the hell had I done? What would people think? What would happen? Would I be sacked? Above all: This is not how a Director should behave.

Am I flaky? Or real?

Yes, I have listened to Brene Brown’s wonderful Ted Talk on vulnerability. She has undertaken research on shame and seen that those who are ‘whole hearted’ live lives of courage (being able to tell the story of who you are with all your heart), compassion (being able to be kind to themselves first as only way to being truly kind to others) and connection (letting themselves be who they are in order to be authentic).

These are people who believe that being vulnerable is not excruciating but necessary. They are willing to say ‘I love you’ first, do things with no guarantees, invest in a relationship that may or may not work out. And, she says, that if we numb that vulnerability, we numb joy and other emotions. She implores us to ‘let ourselves be seen’.

Seductive, powerful stuff. But easy to talk about in theory, and on stage. Harder to deal with in the toilet.

Emotion

Here is Michael Seres talking about being a patient entrepreneur:

As a patient, you are used to dealing with multiple complex issues on a daily basis. Then you add a business on top and you have to demonstrate you can cope. If you are a patient then any investor will ask about your health issues. How will they impact on the business? I knew the question would come up, but didn’t know how to answer it. In the end, I chose honesty and complete transparency.

Do not hide anything: you will get found out. Just because you have health issues does not mean you can’t be a brilliant CEO. It made me more determined to prove I could succeed despite my health.

You have to learn to balance your emotion with sound business principles. However, I find that emotion plays a role in every decision I make. But sometimes you have to take the emotion out.

So, when should you bring the emotion into play, and when should you leave it out? And more to the point, even if you ‘should’, can you? The ability to do what Michael does rests on at least five factors:

  • One, that you have awareness of what’s going on inside you.
  • Two, that you can distinguish between the melting pot of mixed emotions within and say ‘aha, that’s the one I want to feel or act upon’.
  • Three, that this choice is matched to the external need (difficult enough even when you are feeling centred).
  • Four, that your emotions are a breeze within, and not gusts that sweep you off course.
  • And, five, related to all this, that you have the ability to fine tune the actions in line with your chosen emotions – to ensure the words come out right.

So, you can do all this? Good on you. I can’t. And that’s why I ended up crying in the toilet, having blurted out that I was rubbish.

And here’s the rub. People who have had life changing illness, injury or disability have been shaken to their core and beyond by life. Those brave enough to re-enter the healthcare realm hoping to help, improve or change it bring with them many gifts – feelings of vulnerability, a sense of common humanity across many long-term conditions, raw emotion about powerlessness, a delicately held sense of hope weighed against despair and a passion fuelled by a sense of injustice. The patient’s sense of ‘being real’ – of bringing ‘real’ into healthcare conversations – is the lifeblood of the authenticity we need to change the system.

Being real is what permits sterile conversations about data to be translated into the stories that surround us day in day out. Being real is the connection, the spark, the change. And this can be threatening to those around the table who have often buffered themselves from ‘real’ with statistics, systems and process jargon; the equivalent of the armour of custodial psychiatric staff.

Mark Doughty calls for us to ‘model the sorts of relationships we want to see, and the change we want to be’. If shared decision making is to become the norm, we must carry on wearing our hearts on our sleeves, with vulnerability, uncertainty, anxiety, emotion. How can we change dynamics without ‘being real’. Yes, we need tools, like asking good questions, and the techniques of dialogue. But we need more, and never to forget the roots of where we have come from.

I do not want to ‘toughen up’ and adopt the protective armour of my former custodians, or the grey emotional cladding of the system I have come to change.

Destroy

But being a ‘real’ patient leader can also destroy you. Particularly in the cold climate of healthcare organisations, with their hierarchical systems, arcane processes and mysterious excluding languages and code.

I have shuddered when hearing the words ‘challenge’, ‘concern’, ‘appropriate’ and ‘disappointed’ at committee tables – they conceal a sinister threat. Those words are the weapons of the powerful and culturally entitled. How dare one say words like ‘angry’, ‘wrong’, ‘worried’… calling a spade a spade is risky. Revealing you don’t understand or that you feel anxious or angry marks you out and can bring strong feelings of isolation.

Here is Dominic Stenning. His blog inspired me to write this piece. He writes of his emerging work as a patient leader, stepping into improvement roles, and presenting at conferences:

The whole time all this was happening my depression and mental health hadn’t miraculously vanished, it was always there, sapping me of my energy, ability to focus and continually plaguing me with negative thoughts about my ability to hold it together or succeed in general. However, I did hold it together, but the cracks were starting to show as I was neglecting the basics.

You see it completely sapped me of energy making even small tasks seem insurmountable, yet I seemed to manage to get the big things done such as writing presentations and delivering talks on my personal experiences involving leadership, patients experience, collaborative working, social media and highlighting the growing movement of Patient Leaders which I’m very passionate about.

Looking back I neglected to talk about my current mental health symptoms as I just wanted to show I had the same abilities as anyone else and was “strong”.

Do read all of the blog, for a particular insight into the blessings and curses of being a patient leader. I am particularly intrigued by Dom’s wanting to be ‘strong’ and Michael’s emphasis on sometimes ‘taking out the emotion’. Is that what we have to do? Or is there a different way to deal with the ‘emotional labour’ of being a patient leader?

Emerging from the toilet

And while I was crying in the toilet, I thought it was costing me too much as well. My old feelings had risen, and my fears of breakdown and worthlessness were all encompassing. Eventually, I came back out and returned to my colleagues. I told myself to ‘be strong’. I apologised.

In hindsight, I don’t know whether that was the right thing to do. Having an outburst and then saying sorry is a familiar trait, and leaves me feeling child-like for a second time. However, I did manage to say how I felt, and also what help I needed. And it was like a boil being lanced. That project has moved on, and a huge weight felt like it had been lifted. They had seen who I was, and what I felt. But I was mixed – surely there could have been an easier or better way to get to that point. Or was there?

Interestingly, a close friend of mine pointed out that my actions were entirely in keeping with the ‘patient leadership’ role. She said I mirrored the sort of behaviours a patient manifests when being the outsider in a health care system that fails to engage.

If that is the case, there seems an inevitability about my current experiences. And no doubt that a ‘patient leader’ within the system will create ripples, or even waves. And maybe that is part of the point. But boy (and like a boy), it feels hard at times!

Froth

Meanwhile, leadership programmes froth about the need for a different sort of collaborative leadership culture – one where leaders display integrity and authenticity. But this is often vague cheery stuff with little grit for our busy lives.

A couple of things strike me.

It seems both easier and more difficult to admit uncertainty when in a powerful role. If you are an underling, admitting uncertainty and vulnerability leads to thoughts about what those in power can do to you. I covered over my mental health problems during my early career, and lied on my CV. Now it feels safe to admit to it, particularly because the posts I have had rely explicitly upon that experience (thank heavens).

If you are in power, the practical and immediate consequences may not be so terrible (i.e. losing your job), but the sense that you are undermining your own authority is intense. That comes with other thoughts – how leaders should be decisive, know what they think, trust their guts, be in control, offer certainty when those around may be fumbling. If you crumble, what hope the rest? It can be lonely.

Despite countless videos on vulnerability, leadership programmes stressing integrity and authenticity, this is the real world – a director should not cry in the toilet (there’s that voice at my shoulder again).

It is also easier to admit uncertainty, hurt or vulnerability if it is in the past. It is easier to say ‘I felt this, and did that’ than to say right now ‘stop, I am lost, I don’t get it, I don’t understand what to do, and I need your help right now’. I find it easier to tell of my anxieties when they are safely tucked away in the memory.

In my opinion, it is particularly hard for those diagnosed with mental health problems. The shame and stigma is a very sticky label. And it harder for someone with current mental health problems to disclose, or appear vulnerable, than for someone like me who has recovered. This distancing allows me to be more confident in my disclosure.

(Interestingly though, my patterns of thought can be similar, though less intrusive, to those I had when ill. Am I really fully recovered?)

I don’t understand

If the role of Patient Director is to mean anything, it is not just about co-ordinating a series of programmes and developing the systems and processes. Though that is important. It is not just about wielding formal hierarchical power, though that is important too.

If it is to be successful, it must also be about exposing the system to a different sort of energy, and that seems to include permitting oneself (and therefore others?) to share vulnerability, hurt, anger and uncertainty. As Alison Cameron says: ‘I need to feel less ashamed when the intensity of the emotion this all brings up overcomes me. To avoid it or suppress it so it leaks out in other ways is to do what we challenge professionals for doing. I am there to be real and to show professionals that not only is it alright to be so, it lends authenticity and power to what we are all presumably trying to do’.

I have blogged a lot about the need for honest conversations at the table about difficult issues. If I can’t model that, then what is the point? But but but I still hear myself say… stop crying in the toilet!

There must be another way. I must be able to admit the uncertainty before it gets to the overwhelm stage. I need to sense the forthcoming drama and find ways to say it (not cry it), name it before it reaches the stage of outburst. I need to walk the narrow way of the A&E nurse.

In particular I need to be able to say ‘I don’t understand’ or ‘I don’t know’ in ways that are safer for me and perhaps others. I also need to deal with my anger in particular. Those two vulnerabilities – uncertainty and rage – are an echo of the psychiatric patient that I was, facing the terrifying system and the raw power of health professionals.

Superman

And sod it! Sometimes, I am going to get it wrong. Maybe it’s not always my problem. Others need to deal with it. My organisation needs to deal with it. Just as I need to deal with the understandable emotions of others when they are stressed – not unusual in the health care environment just now. And I need to forgive myself more quickly when I ‘get it wrong’. I am not perfect.

And maybe that’s the root of it all. Surviving mental health problems has only exacerbated my adolescent feelings that I should be Superman. I have to do everything. I have to do it now. But I am still the same neurotic bundle of habitual stuff – good and bad.

As a Patient Director I profess to a different style – my job is more about ‘giving way’ to others, ‘giving away’ power, and ‘giving a way’ to others – coming up with the processes by which others can be involved, brokering discussions between patients and professionals. It is not about knowing it all.

Here’s the most difficult thing of all to say 🙂 As a Leeds Utd fan, it is through clenched teeth that I admit for the first time that I love how Alec Ferguson handled Eric Cantona after he Kung Fu kicked a Crystal Palace fan, and had served his community sentence. Did Fergie punish him? Demote him to the reserves? Tell him to turn down that ridiculous upturned collar? No, he made him captain. He found a narrow way that allowed Cantona to channel his passion. And the rest is footballing history. There’s a lesson for Patient Leaders – we all need a Fergie.

So, closing a blog on an uncertain note, without solid conclusions, seems, well, flaky. But this is all still in the making. In the stress of the current health and corporate system, the journey towards the sort of vulnerability that Bene Brown advocates is, well, vulnerable…

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.

1 Comment

  1. Rachel Papworth 3 years ago

    Thanks for this searingly honest post, David. It makes me feel better about the time, while in a senior role, I locked the door of a (large, accessible) toilet and went to sleep on the floor! I was avoiding a situation that I found horrible and couldn’t find a way through.

    You’re right that it’s easier to admit uncertainty, hurt or vulnerability when it is in the past. I partially articulated the issue to my manager at the time, but held back from total vulnerability/honesty for just the fear of undermining my authority/standing that you describe. Maybe, if I’d opened up fully, she would have been able to help me address the issue.

    It’s only with hindsight that I have a clear view of what was going on in that situation. I felt sidelined by a consultant we’d brought in, and who had been able to push my steering group to make a crucial decision. I can see now that the consultant was able to do what I couldn’t because of her position as an outsider to the project, and that my hands were tied by being employed by one of the steering group members.

    Easy with hindsight. Tough at the time.

    Maybe keep a travel pillow in your bottom drawer, along with a hanky.

    Thanks for your openness in this blog. It’s helped me let myself off the hook.

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