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…

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

  1. Very early in this blog you pose the question ‘Am I flaky? Or real?’ -my answer is that you are neither exclusively as who you are is David Gilbert a unique blend of humanity which can have many labels, descriptions depending on the variables of life.

    So stop trying to label yourself however tempting the human drive is to create order or put yourself in boxes in order to be tidy-take note and trust me I’m a patient!

    But seriously all the frustration you describe I experience and struggle with too as someone being a patient adviser/expert/leader…. or whatever the NHS want to call me depending on what meeting I’m in.

    Some days I think I’m going to walk away as sometimes I’m overwhelmed physically and mentally and doubt myself and my abilities. (I found myself having a panic attack on a train recently, after a London meeting & wondering whether I could stem the tide of tears billowing inside me.) I’m keeping going today as I know I have an opportunity and a voice that others don’t and I think the NHS needs to have that counter balance to obsessions with finance and structures with thinking about people and patient experience.

    There are no ‘solid conclusions’ only uncertainties but having diverse voices working together can bring some sense which I believe will help patients now and in the future.

    You are not ‘flaky’ you are David Gilbert.

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    1. I’m interested you use the word recovered…..on what definition of recovered are you working? You are possibly economically recovered, but how can anyone recover from emotional responses they have never yet learnt to deal with? We are all on a journey of growth I suspect. Yes, we can recover from psychological injury, but we must grow into emotional maturity in my opinion. I for one still have learning to do in this area and I celebrate that.

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  2. Thanks so much for this thoughtful, enticing, questioning blog.
    It resonates deeply with me, and I know I will need to read it several times more to be able to learn everything that I know I can from it.
    On first reading, though, I felt deeply unhappy that you were told you “mirrored the sort of behaviours a patient manifests when being the outsider in a health care system that fails to engage” – and that you then felt you should apologise for this. Has anyone considered apologising to you?
    Surely their behaviour is what needs to be sorted out – if patients needs are to be truly met, in an organisation that is supposed to be about meeting patient need, and not just about trundling along in an organisation-first, organisation-safe mode?
    You said that you “could not process the language that was being used by others (about systems and processes)”. Maybe that language was the problem? Maybe you “stopped being able to hear the explanations that were being provided” because they weren’t actually answers to the sort of questions patients need answered?
    So if anyone’s ‘flaky’ here, I’d be pointing my accusatory finger at the organisation.
    I could take a guess that a fair few patients (who we’re supposed to be about) are also off crying in all sorts of places, faced with language and explanations that make very little sense.
    More strength to your arm!
    And many thanks for your very valuable blog!

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    1. Thanks Caroline. Insightful response! I would reiterate that I did ‘mirror’ the behaviours that patients manifest…’ but, you’re right the language, and some other things, were a problem. As I mentioned in the blog, I do think saying sorry was the wrong thing to do. As to apologies from those around me, there was distinct recognition that we needed to do things differently, and we need to carry on discussing how patients can be true partners (me as part of the organisation, and others as they come in to help us do stuff). Glad you liked the blog!

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  3. As a non patient leader (how constrained language is, even when we make up the terminology ourselves) I am fascinated by the way in which you’ve described your vulnerability.

    I wonder if it surprises you to know that I experience the same mix of fear, confusion and that urge to flee that you do when confronted by the semantic manoeuvring of the “powerful and culturally entitled.”

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    1. Doesn’t surprise me at all. We are human. However, I think there are particular challenges for humans of different types from different walks of life (including those of clinicians and managers that are no less valid) and different experiences. For patients, as described there are particular triggers and consequences. See, for example the insightful comments on here from Carol McCullough.

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  4. Thanks for this very powerful, insightful blog David. I had my first experience of hospital over 50 years ago- chronic kidney disease. I have been living with a kidney transplant and hefty medication for nearly 30 years. My experience of health care in this area has been excellent. After receiving great care I lived through a terrifying experience linked to lack of understanding, poor communication and a few other problems when a rare disease and inflammatory conditions raised their ugly heads. But the problems that zapped any kind of strength I had were as a result of my questioning mistakes. The being ignored, denial, being misquoted, my personality attacked- nothing was real. This had much more impact than all the health conditions combined. I had asked to be tested for a genetic condition because of symptoms that were consistent with it and for which no other cause had been found. Over years I received a lot of very, poor quality conflicting advice- a world expert’s words not mine. The fact that I was aware myself over the years that I was receiving poor quality, conflicting advice and that two relatives had died of the same condition before it was diagnosed at post mortem on the second didn’t help. Yet in my case it had a happy ending- or as happy as not being in the best of health can be. I met wonderful doctors who sorted out the confusion and I am receiving excellent care again. Doctors were pleased when I told them that I was joining PPI groups because I wanted something positive to come from my experience. There is a lot to learn from it including how problems in diagnoses were resolved; and there is no denying that it has a positive outcome. However, my patient experience is not considered positive because my ‘whole’ experience has not been. I cannot be real and the reason I became involved cannot be real because reality is not acceptable. Sometimes it is not the way we talk about our experience that is the problem; it is the content of the experience. Patients involved in PPI initiatives may drift away due to failing interest or diminishing hope that it may at sometime lead to meaning something to them. Or there are patients like me who are constantly being exposed to reminders of the bad experience; who eventually lose their cool especially if feeling under attack; or who simply close down; who have more chance of being real sitting in the garden with a cup of tea and can feel much safer there protected from the reminders. If there is not more effort put into accepting patients’ experiences as they are, and understanding the negative impact PPI can have, many PPI initiatives will end up with involvement from the ‘nice to haves’ and ‘pleased to be heres’. And that will never be real.

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    1. Dear imonlyslightly
      I know you’re writing to David – but I hope you don’t mind me commenting on your comment. You write that “being ignored, denial, being misquoted, my personality attacked… had much more impact than all the health conditions combined”.
      O. yes, yes, yes!
      For me, being a patient with Multiple Sclerosis (MS) is immeasurably worse than being a person with MS.
      I’m happy that you’ve come out the other end – but why is it that its so common having to fight so hard against services that are supposed to be helping?
      Ps. I’m not at all sure why you’re ‘only’ or ‘slightly’?
      Best wishes
      Caroline

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      1. Thanks for your response Caroline. The questions you raised are linked. I have a kidney transplant, the neurological form of Wilson’s disease (WD) and three inflammatory conditions. It is believed that one of my inflammatory conditions is highly likely to have been caused by WD because no other reason can be found to explain why evidence for it has been found. If so I have what is known as the neuro-osseomuscular form of WD. There are many presentations of WD and the classic name for the neurological form is neuropsychiatric. I have not been referred for psychiatric assessment because doctors have not seen the need. I do now have good doctors and can trust them. The secondary care doctor I initially was referred to, and who coordinated early investigations, was out of his depth. With regard the name imonlyslightly I requested my original medical records and eventually managed to get hold of a copy of a letter that he had written to another professional. He had advised that hand swelling was subjective (all in my head) because I was slightly obsessed with WD. This is now disproven. However imonlyslighty is actually a reference to his advice that I had no neurological signs but a slightly odd personality. Neurological signs that are not normal were detected later; they are under control and I am OK in this area at least. I did raise concerns including that the term ‘slightly odd personality’ is not appropriate language in a patient’s medical records. However an Independent Medical Advisor decided that it was reasonable to describe if someone has a slightly odd personality because a slightly odd personality is a sign of WD. I suggested that the IPA apologise- it didn’t happen. I have given up on that. I use imonlyslightly as my Twitter name. It should be considered as tongue in cheek and not that I approve of the comment. It is a sign of the paternalistic attitudes that still exist; and that patients can be described as a professional pleases. So patients are at the mercy of the health care staff they meet. It makes me feel very fortunate that I am currently under the care of great doctors.

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