The diagnosis

It is only 6 words.

‘I think you have polycystic kidneys.’

But there is nothing simple about being given a diagnosis. It means interaction with a new world of people and initiation into a different way of life – the doctors, nurses, therapists, surgeons, technicians, and the places you will find them in- the new hospital clinic you haven’t been to before, the x ray department, the laboratory, each with their own particular perspective on your illness and what is going to be best for you- body and/or mind. It is about learning how to speak in a different language. It is also about your own memories, ideas, worries and expectations of what that diagnosis means to you, and all the other things you will have to do in your life, or have done to you, that you have never experienced before and hoped that you never would have to. And all those things that you hoped to be able to do, but now perhaps never will.

I don’t have much memory now of how kidneys should work. Blood flows in and urine flows out- and the kidney works some kind of magic in between. The first patient whom I cared for long enough in my first job as a doctor to get to know as a person, and who I then saw die, had kidney disease. It was very different from my own. He had diabetes and came into hospital when a viral illness sent his damaged kidneys into failure. I listened in the ward office to the renal team as they decided against taking him on for dialysis, which unlike now was very unusual for patients with diabetes as they ‘did badly’. I watched from the door of the single room where he spent his last few days as he said goodbye to his wife and children. He was a young man- no more than 40. And I felt even more helpless as his wife screamed out in agony at the sheer unfairness of his sudden, and so unexpected passing. A phrase, ‘The Renal People’ uttered by the surgeon, a very kind and well-meaning man, evoked a particular and unwelcome memory for me.

Despite feeling fitter than I had for years, it felt as though my body had let me down. Something was happening inside me over which I had no right of determination. For the first few days after the surgeon delivered his verdict I felt numb. Then, like many people, but especially doctors, I spent hours on-line researching the subject until the rational part of my brain was exhausted. I collapsed onto the easy chair in my study and burst into tears. I sobbed until my throat was hoarse, my chest was tight and my shirt was wet with tears. John put his arms around me and held me. I knew I was beginning to grieve for the loss of my health, and the hopes I had for the future. And it all seemed so terribly unfair. Just `at the point that I had given up the work that was gradually killing me, and was prepared to restart that life I had postposed for so long, I had to find out that something else was going to do that anyway. The sociologist Mike Bury talks about the biographical disruption of chronic illness- how it necessitates a fundamental re-thinking of one’s biography and self-concept. The timeline of my life has been fractured and it is still physically painful.

Now I know that I have a genetic disorder of the kidneys that I’ve had for many years, but didn’t know about before, and which is going to get worse as I get older, at a rate as yet undetermined. There is a possibility I will eventually need to have dialysis. My kidneys and liver contain within them cysts, which have been slowly growing in size, squashing the healthy tissue into destruction since my childhood, or that is what the Professor of Nephrology had told me.

‘It is something you have always had. It isn’t new. Its autosomal dominant so you have a 50% chance of developing it if one of your parents carries the gene, but in about 10% of cases it’s a new mutation.’ He couldn’t understand why investigations carried out in my early thirties hadn’t revealed the problem then. As the years passed the timer on my kidneys had been ticking away silently inside me and I had been completely unaware. It had been programmed into me at birth and was probably running quite slowly otherwise it would have been noticed much sooner. But I suspected that the other problems that my family genes had contributed to- a constant sense of anxiety and periods of severe depression, would have been even harder to bear if I had known. Neither of my parents had been diagnosed with kidney disease as far as I knew before they died, but my maternal grandmother had collapsed in the street and died suddenly in her thirties. I’ve always believed that must have been due a brain hemorrhage, and brain aneurysms are a possible complication of this disease.

It may be impossible to ‘recover’, in terms of restitution to my former state of ‘health’, in mind or body and I have no idea what will happen in the future- other than I hope I can manage my mood more effectively than in the past, and that it is possible I may need renal dialysis at some point. I can no longer make the excuse that I am still waiting for the future to arrive before I have to reclaim the life I always wanted to live if I just had the time. The ‘future’ is now and I will have to discover how I can make the most of it.

My latest book, a memoir of psychiatry and depression, The Other Side if Silence is available now

 

 

 

Moods

Not everyone who gets depressed recognizes the experience of simply ‘feeling low’. The pain of emotional suffering comes in many different forms. The agony of heartache; the exhausted feeling of weariness with the world; the anguish and torment of ruminative thoughts of guilt and despair; the perception, which can develop into a terrible sensation of being beyond any feeling at all, that all of the joy has simply gone out of being alive. A sense that the world has gone from being a place where there is still a potential for happiness, to one which seems empty, hopeless or even dead.

But each day I am aware of something I call my mood. I have more time now to reflect on my life from moment to moment than when I was working. Rushing around all day meant that I was probably less acutely aware of it and yet my mood is a key part, for me, of my experience of ‘being in the world’. It’s the lens through which I see what is happening around me- and its qualities on any particular day colour, clarify or even completely distort the different ways I am able to think about myself, the world around me and what will happen in the future- just as when I was a child, the Hall of Mirrors in the fairground warped my reflection: sometimes I was amused by the altered image that was reflected back to me. Other times it horrified me.

Mood is more than simply ‘feelings’ or ‘emotions’- it’s a longer lasting state of mind and it encompasses everything you are thinking about- it can transform how you view events around you and change something which yesterday you thought was a great opportunity into tomorrow’s disaster in the making. We aren’t always aware of our mood but the people around us often are. My mood is not only the spectacles I wear but the overcoat I show to the outside world.

My mood is both me and yet not me, simultaneously. I cannot manage without my glasses. I know, rationally, when I feel down that if I could will myself in some way to change them to a different pair, the world wouldn’t look as bad as it does to me at that moment, but those are the only ones I possess. Tomorrow, or even tonight things may appear differently though them, brighter, sparkling and full of hope. My mood has never been ‘high’ –However I do have periods of irritation and agitation when I can get very angry with people around me when I don’t think they are doing what I think is the ‘right’ thing. But what I perceive as ‘right’ can also change with my mood. When I’m feeling positive even the things I find most boring can seem worth doing. At times my mood seems to be balanced on a knife edge- it can change within the space of a few hours. But then it can remain stable for months.

When something really seems to shift in my mood, it is as though some unseen being in my brain pulls a lever.  Usually this happens in response to a build up of life events (yes, social factors play a key part), and when these events are of a particular kind that holds an inherent threat to my sense of who I am (the psychological part), then my mood is much more likely to shift, and quite rapidly too. When I was working full time I could move from feeling anxious, but keeping my head above water, to quite a different state of mind, within a day. When I am there I feel quite different. I don’t only feel sad, I feel physically ‘changed’; heavy of limb, tired, unable to sleep yet also very agitated. I ruminate about things that at other times I would be able to cope with easily. I am full of fear as the negative thoughts I have about myself the world and the future come flooding back.

If I am going to manage my moods more effectively I know that I need to work harder at challenging my familiar, but hard to live up to, rules about how to live in this world that I identified in therapy. But I mustn’t beat myself about the head if I am not able to do it every time. Making another rule for living that I cannot keep is not the answer. I fantasize about being the kind of disciplined person that meditates every morning, exercises every afternoon and eats a healthy supper in the evening, doing everything that I know is ‘good’ for mental health.

I want to be able to keep the awful low periods and those hopeless suicidal thoughts at bay if I can, but if I don’t succeed I have to remind myself that, with time and care, the way I see the world usually changes once more.

The first rule we often have to challenge in life is that it is unacceptable to fail.

My memoir: The Other Side of Silence: A psychiatrists’s memoir of depression is available now.

Nobody’s Inspiration

Wonderful poem which Dan Holloway performed after my recent talk in Oxford. Please click on the link to his original blog to read it.

dan holloway

Yesterday, I had the absolute honour of delivering the thanks to Linda Gask, who gave the second Oxford Disability Lecture, delivering a hugely-needed, unflinchingly honest, uncompromisingly demanding, and refreshingly pragmatic talk about her own experience of depression as a person, as a psychiatrist, and as an academic. There will soon be a podcast, but I wanted to share the text of the poem now. It was a fabulous, and very exciting experience delivering it to such a receptive audience, and in front of the University’s Vice Chancellor (it struck me as a delicious irony that after nattering to her for a while afterwards, I have probably spent more time with her than my bosses). Please check out Linda’s book The Other Side of Silence here.

At Hawkesbury Upton Lit Fest At Hawkesbury Upton Lit Fest

Nobody’s Inspiration

Stigma is the thing with branches,
the miserly larch that will not shed its spines in winter,
the hollow…

View original post 392 more words

Do self-help books work?

 

Having just returned from the USA where all bookshops have extensive sections on ‘self improvement’, and ‘self-help’ is big business, I couldn’t help thinking Bridget Jones had the right idea when she tossed them all into the bin. As a lifelong cynic I find the wilder claims made by some authors completely beyond the pale. I simply don’t believe that reading a book by a well know hypnotist can make me rich, thin or universally loved, but I do know that selling this promise has certainly made him wealthy.

So when I got home to Yorkshire I scanned my bookshelves to see how many I could find. There were a few more than I suspected, including two celebrity endorsed books on nutrition and fitness, a book for the ‘highly sensitive person’ (how to thrive when the world overwhelms you); a guide to help people who live with a person diagnosed with borderline personality disorder (I’ve absolutely no idea why I bought that- but perhaps it was a present for my other half). Similarly there was an aging copy of ‘Do I Have to Give Up Me to be Loved by You?’ with a photograph of the idyllically happy couple who authored it on the back. Where and when did I get that? Under one of the piles on my study floor I later found a copy of ‘Organising for the Creative Person’ … clearly ineffective.

However, to be serious, I can understand why self-help books are so popular:

  • A book is cheaper than therapy- and easier to obtain.
  • A book provides not only information, but hope, inspiration and things that you can practically do to solve my problems.
  • There is a vast choice of different books on offer. When one doesn’t work you can always try another.
  • The answer to your problems- all in one book?

I didn’t write my memoir as a ‘self-help’ book, but I’ve heard from readers who have found it helpful in explaining what depression is and how it can be treated. I hoped my story would provide some insight and hope for others living with depression, but it doesn’t contain much direct advice or strategies for coping. I just don’t have a simple, straightforward solution that will fit everyone who gets depressed. My explanation is more complicated… that everyone has their own experience of depression, and the parts played by psychological, biological or social factors not only differ between us, but change throughout our lives. Nevertheless some bookshops include my book in the ‘personal development’ section and maybe that is one place it fits.

The books that really trouble me suggest:

  • There is a single, simple answer to your problem
  • What has happened to you is essentially your own fault and there are things you should do to overcome this.
  • Strategies that may actually be harmful- such as stopping all prescribed medication because the author hasn’t personally found it helpful- and failing to tell you to discuss it first with your doctor, or get some informed advice about how to withdraw gradually.

And if you cannot get any benefit from the strategies that are suggested then this can lead you to blame yourself (if you are not doing that already) and feel even worse. Many of the things that cause us problems are not under our control, so we might feel even more helpless because we cannot change them.

But can they really help? There is remarkably limited research into this question. Self-help books really do seem to be effective for some people, but most of the published evidence is from those that apply ideas taken from cognitive behaviour therapy. ‘Guided’ self-help where the book is used in conjunction with brief sessions from a therapist, in which you can discuss what you have read, ask questions and generally be supported through the process of change, is more effective than simply reading a book on its own. Information alone isn’t enough- support is also important in helping people to help themselves.

Self-help is also more likely to work if you are highly motivated to seek help, and positively choose it, not have it prescribed to you- which was clearly found to be a problem in the recent study of computerised CBT prescribed to people with depression, in which I played a minor part. And a person with more severe depression simply may not have the drive and energy to find that motivation- which is one of the reasons I find the exhortation to ‘Climb Out of Your Prison’ (the title of a bestseller in the genre) so problematic, even though this idea clearly has currency for some. I’ve previously written on this blog about the crass insensitivity of handing information and leaflets out to people with severe mental health problems and those who are in crisis.

What one person will find a helpful idea will be an anathema to others. The social scientist Bergsma, writing in the Journal of Happiness Studies (yes, it exists) suggests that self-help books ‘offer a strong antidote against learned helplessness… but perhaps for readers that do not suffer from it.’ And current health policy supports the idea that we should all be responsible for ourselves, however unwell we happen to be, rather than dependent on the state.

Books can provide information and inspiration, but they can only point to possible directions in which to travel. According to Susan Krauss Whitborne, writing in Psychology Today the prospective reader might do 5 things:

  • Check out the author’s credentials- who are they? How are they qualified to write on the topic- and that doesn’t mean they have to an academic reputation or be famous.
  • Think of the book as your therapist: work done by Rachel Richardson and her colleagues at the University of York suggests that a successful self-help book establishes a relationship with you, gives you hope, confidence and anticipates you will find it difficult to keep going at times. Just like a good therapist.
  • Look critically at the quality of the writing. Is it going to ‘engage you, enrage you or just bore you to tears?’
  • Decide if the book will motivate you.
  • Don’t be afraid to give it a critical reading.

I have just remembered there are several more bookshelves in Scotland – and that’s where the latest ones are…on mindfulness.

If you ever hear that I am writing a self-help book, please remind me to re-read this blog.

My memoir ‘The Other Side of Silence: A Psychiatrist’s Memoir of Depression’ is available now.

The morals of medication

Is taking medication for depression the ‘easy option?’ I come across this viewpoint regularly on social media. Usually there is a suggestion alongside that therapy, which I completely agree is hard work, is somehow a purer way to recover. The right way.

The history of psychiatry is rich in references to morality. Is a person ‘mad’ or ‘bad’? Is there really something wrong in the brains of those society labels as bad? Is addiction an illness or simply a behaviour choice? Are we excusing bad behaviour by medicalising it?

Many people who consider medication for depression will find themselves wondering whether it is a ‘good’ thing to take it. When you are depressed it can be very difficult to decide what is the best thing to do, and decisions are taken not only on the basis of discussion with health professionals- moral judgments also play an important part.

  • How does taking antidepressants affect how I feel about me? Does it mean that I am weak?
  • Is it the easy option?
  • Shouldn’t I be able to sort myself out without them?
  • What will other people think- my family- my friends…will it change how they see me?

Alice Malpass and her colleagues identified two parallel journeys that the depressed person embarks on. The ‘medical’ journey goes something like this:

  • I have a duty to be well. Other people need me to be well.
  • If I recover then there won’t be any risk of being seen as ‘mentally ill’.
  • I can get back to my old self and be in charge of my life again.

I’m sure I’ve used some of these arguments in conversation with patients. Any doctor who says they haven’t is not telling the truth- but to consider these are the only things of concern about medication is inherently simplistic and paternal, and reminds me of the cartoon of a couple walking along a beach, smiling and carefree, who say they feel so good they must be in a pharma advert.

In parallel the person is perhaps also on another journey- the ‘moral’ one.

  • I feel awful because I have to ask for help.
  • I feel even worse because I need to take tablets.
  • Is this person the real, authentic me? Am I now my old self or someone else? Or am I only this person because I am on tablets?
  • Am I hooked on these now?

Damien Ridge, who has analysed many interviews with people who are depressed talks not only about the lack of legitimacy for tablets, but also for what they are being prescribed for.

  • Is ‘depression’ real?
  • Shouldn’t I just ‘pull myself together’? Isn’t that what everyone else thinks?

There is a great deal of literature on whether ‘depression’ is ‘real’ or simply no more than unhappiness. And if it isn’t real, then the treatment for it cannot be legitimate either, little better than using street drugs- as one person in Ridge’s paper calls his tablets: ‘My dirty little habit’. I’ve spent my career arguing that to use the term depression is not simply medicalising misery but giving a name to a particular experience and quality of suffering which is not just unhappiness but a deep, dark, hopeless, despair. It has many causes, and it isn’t a single ‘phenomenon’ whatever DSM tells us. But it’s a state of mind that many people with different stories share in common. I experience it too. I have asked all of these questions of myself. I have watched colleagues who work in mental health look a little embarrassed when I get out the tablets at breakfast. Perhaps I do that simply to show I am not ashamed- but I do wish I could have lived my life without them.

All of the above supposes that antidepressants do actually work. Many people think they don’t, and others think they can do harm. You can find my views on these points elsewhere on this blog. I take them myself and they keep me reasonably well, but I have friends and colleagues for whom they have not worked- the medical journey is inherently optimistic- just like the pharma ads, but in reality life is far more complicated. And they are never sufficient on their own.

If doctors, and sometimes friends and family, try and influence you to focus on the ‘medical journey’ then others will try to steer your moral journey. It is really hard to focus on what is right for you when you cannot think clearly. When you are depressed, you are already struggling with guilt and shame and sometimes that can tragically end with the decision that the world is better off without you- that this is the right thing to do.

So I would only ask those who make even subtle comparisons between the easy way to ‘block out the pain’ with meds and the hard way of suffering through therapy to think before they write. It is only human to want to alleviate pain, and sometimes the tablets are the only thing that will do it. To infer that a person needs to suffer in order to be blessed is one of the ultimate moral judgments- and can be found in most religions.

Depressed or not, clinician or service user, expert or lay person-none of us have the right to sit in judgment over others.

My memoir: The Other Side of Silence: A Psychiatrist’s Memoir of Depression is available now.

 

 

 

 

Borderline Traits

A recent reviewer of my memoir about depression and psychiatry has noted that in describing the emotional mess of my early adult years and on-going struggles with low mood, I ‘courageously come close to defining traits of Borderline Personality Disorder’.

I really don’t mind her saying that- indeed part of me is actually surprised that she is the first person to do so. I purposefully included a description of my difficulty in relationships, mood swings and problems in trusting others alongside a description of similar problems in one of my own patients. I wanted to show not only the variety of ways that people can experience what we commonly call ‘depression’, but also how my own problems mirrored those of my patients, such that there was very little distance between us.

By this time, in my early thirties, I had already had quite a long period of psychodynamic therapy but was still having problems:

 I didn’t know how to begin to contain these frightening feelings when they took hold of me. There were times when I felt low in mood and physically exhausted, as though there was a weight bearing down on my chest, which prevented me from moving. On other occasions, it seemed as though anything and everything was possible. At those times I did seem to lose control and retreat from reality. It was then that the suicidal thoughts would return, although by then usually only fleetingly.

Nevertheless, I recognised only too well the persistent state of emotional chaos that Elizabeth Wurtzel described in her book, Prozac Nation. I particularly empathised with her when she talked about wanting a therapist who could help her to learn to be a grown-up and to show her how to live in a world where the phone company didn’t care that you were too depressed to pay the phone bill.   (From The Other Side Of Silence: A psychiatrist’s memoir of depression)

 I’m well aware that there are features of my personality and behaviour that could well be called ‘borderline traits’ and it’s interesting that no one else has mentioned this. Is it because I am a Professor of Psychiatry? Is this the kind of thing one shouldn’t  say to me?  Most people have been incredibly supportive about my honesty, but others- including one or two mental health professional colleagues, have seemed a little embarrassed by my openness. Some will have been on the receiving end of some of my irritability and anger in the past- which is always much worse when my mood is going down. If so, I can only offer my apologies, but might add that in my experience some mental health services can be less than sufficiently understanding of the emotional problems of those whom they employ.

As time goes by my views are changing, despite having written on the topic of Personality Disorder in the BMJ; and this largely because of my anger at the lack of access to appropriate therapy for people who need and deserve help, rather than abuse. I’ve always been aware that people like me who perhaps have ‘difficult’ personalities (I prefer to think there are also times when I can be very warm, creative and caring too) are often dealt a bad deal by mental health services, when they get depressed. Our difficulties with early attachments both make relationships difficult to cope with, and predispose us to longer periods of more severe depression and anxiety as well. I have considerable sympathy with the view put forward by Peter Tyrer that Borderline Personality Disorder is ‘neither borderline nor a personality disorder’. People given this label describe ‘symptoms’ for which they desperately seek help, and don’t demonstrate persistent and inflexible ‘traits’. Their problems are not necessarily lifelong (which I understand personality traits as being), and they can be helped to change over time.

My mood is still unstable at times, but not to degree it was before I had the right kind of therapy to help me comes to terms both my past with how to survive in the world. I also need medication to stop me from plunging down into prolonged despair- with all the associated physical symptoms of anxiety and depression.

People who have problems with their mood don’t fit into neat boxes. As I’ve argued before, diagnoses have their place in terms of research and predicting likely response to treatment, but they should be used alongside a plan that addresses their main presenting life problems, range of symptoms and underlying aetiological factors that may be maintaining the status quo. Some will call this a formulation, but it’s not simply a psychological one- it addresses all three of the key areas- biological, psychological and social.

We need to design the treatment around the person- looking at what they need, not excluding on the basis of a diagnosis that has become for many, a term of abuse. I know many will still want to use the term ‘borderline’ because it can help get access to the right kind of therapy; but we need to acknowledge that the difficulties some of us have with managing certain aspects of everyday life (without, for me, a little drama on occasions) are simply degrees of the extraordinary diversity of humanity- differences that we should learn to celebrate not abjure.

PS- my husband proofreads my blogs- and says life with me has always been a bit of a roller coaster at times- but he wouldn’t swap me for anything.

 

Learning from Goldilocks

I’ve hesitated in writing about this topic, because I know things are extremely difficult in mental health services at the moment in this country. I don’t want to sound as though I think it is easy to do things differently. When teams are being cut it is very hard, and I am also retired now from clinical care so I am not in the firing line any more.

But what I’m going to talk about goes way back beyond the present problems- as long as I can remember. When I was younger, it pervaded the decisions I had to make when I saw a person in A&E who was unfortunate enough to live on the wrong side of the red felt pencil line in the on-call copy of the Manchester A to Z. It’s the problem that led one senior psychiatrist a few years ago to respond to me in a research questionnaire that no other speciality defines itself more adamantly by what it does not do than mental health. Its important to also say that I am not here referring to the awful burden staff carry when trying to find a bed for a person who needs admission; when they can spend all night phoning around the country. I know they are trying desperately to help the person who is in immediate need of care. I’m talking about what happens at the front line contact- when a person is referred by their GP, or seeks help- long before their problems have reached the point where admission is indicated.

We talk a great deal about patient and service user centred care in health services, but what we deliver and receive is not always that. The `Goldilocks Principle’, which applies in many areas from climate study to economics, states that something must fall between certain margins, rather than reaching extremes. The earth is a Goldilocks planet as it falls within a planet’s habitable zone. So what does have this to do with health care? Well, in mental health care the situation is often the reverse of the Goldilocks story. Instead of one person and three bowls of porridge, which may or may not be right for them, we have the reverse. Three people and one bowl of porridge. A service often defined by what it will not offer rather than how it might help, with no other options available for the people who do not fit these criteria. The decision not to help the other two people is often accompanied by the statement ‘we are not commissioned to provide X,Y……’ This is not a new phenomenon. It existed beyond the current cuts, but they have made it worse.

Now, there may be so little on offer that even access to that single bowl of porridge is limited or absent. Or a person may be told that their health will have to deteriorate further before the service will accept them. ‘Go away and come back when you are just right, even though we all know that is going to make it even harder to provide the help you need in the long run.’ And I know this is not a new phenomenon in the inner city populations where the lack of opportunity for early, timely intervention means a person may only be offered help, even though their GP has tried and failed to get them care for some weeks, at the point beyond which they no longer believe that they need it. So they then receive it under the Mental Health Act.

But when we do get the opportunity to re-build services- and its difficult to have seen thirty years of changes without hoping that something will change again at some point for the better, we need to try and ensure that what is provided is not simply about matching the person to what is on offer. This is what results in the multiple assessments with different teams which service users find so difficult, demeaning and pointless. This doesn’t have to mean allowing a person to choose exactly what they want, like Goldilocks did. We know that has problems not only of cost-effectiveness but the risk of causing harm. It is about having a dialogue in which all views are considered.

On a personal level -It is about thinking- ‘How can I help this person to get what they need’? If I cannot help them- who can and how can I facilitate them to arrive there. If it isn’t available what can I do?

At a service level it is considering how, if the person doesn’t really require specialist care, how can we support their GP, and/or the third sector to provide that care- and if we are ill equipped to do that, how can we find out.

It is also about ensuring we are not ‘cherry picking’ those people who are easier to help to improve our outcomes but trying to meet the needs of the people we were commissioned to help.

At an organisational level it is not only about developing specialist skilled teams to deliver help for more service users with complex problems, but making sure these teams in turn provide the right support to generalists. This will help to ensure service users who need help for which services have not been clearly commissioned and ‘fall between the cracks’ can be offered appropriate care.

It also means fostering a culture of dialogue, trust, respect and cooperation to ensure that the worker who makes initial contact with a service user is not told that their assessment is of no value because they do not belong to a particular profession or work in a certain team.

At a commissioning level, it is about asking the question ‘what are we not doing?’ ‘what isn’t there that should be?’ and ‘what isn’t working?’ for people with mental health problems- who will be able to tell you very clearly. It may not be possible to provide it, but we still need to talk about it and work out what can be done rather than what cannot.

At the moment it may seem hard to achieve any of these things- but these are not new problems and they will not all be solved by more investment. A person should never be thought of as ‘just right’ for a service. The care that they are offered should be, like Goldilocks’s porridge, ‘just right’ for them. Only unlike in the fairy tale, we should also try and ensure that doesn’t come at the expense of others- the three bears.

‘Putting it on’

At the recent Cheltenham Book Festival, The chair of the mental health panel on which I was appearing to talk about my new book asked me perhaps the most difficult question that I’ve been asked so far.
‘So, there is a scene towards the end of your book where something quite shocking happens. Is it alright with you if we talk about it?’
I felt my chest tighten, as I knew exactly what he referred to. It was the moment in which I confronted my mentally ill brother about why he could not get out of bed. It was, I’m still terribly ashamed to admit, the moment that I hit him. I didn’t hurt him, at least not physically- but I did it, I had written about it, and now I was having to face that moment again- only this time in front of an audience.
‘Yes, you can,’ I replied, feeling my anxiety level rise even more, I knew I couldn’t avoid it.
‘So, can you explain how, given your profession as a psychiatrist, you raised your hand in anger and brought a stool, was it?- down on your brother who was clearly mentally unwell?’

It’s one of those moments when you are forced to really admit your thoughts and feelings. Why did I do it? What on earth was going through my mind? I remembered how upset, frustrated and annoyed I was that he seemed completely unable to help himself, whatever I tried to do to support him. He had spent three days in a room and could not get himself dressed. Instead many of his clothes had been torn up and lay on the floor around him. By that time neither of us were functioning in any rational way. I was no longer thinking as the trainee psychiatrist I was at the hospital down the road. I was an exhausted, tearful and desperate person trying to care for someone who seemed to be refusing anything I offered; And I knew what was going through my head: I really thought he was simply refusing to do anything for me; he was perfectly capable of it, he was just ‘putting it on’ to thwart me. In that moment I treated him like many others had in the past. I was acting as though his problems were not real.

In a recent article in the guardian a medical student also admitted ‘before working in psychiatry, I didn’t think mental health problems were real’. I’m sure that is what many people think- that those who complain of mental difficulties are probably just acting in some way, or are simply weak-willed. That certainly seems to be the prevailing view of those who think that people with mental illness can be forced to find work and financially sanctioned if they do not. Logically this can only work if you believe they have considerable control over most of their symptoms and problems-which infers that they must be, to some degree, ‘putting it on’ doesn’t it? If you are responding to voices or convinced of something that is labeled as delusional, your problems may become more real, but then you may simply invoke fear (‘these people should be put away’); or pity, (these poor people need some assistance) an emotional response I have seen in those mental health workers who are sympathetic to people with more severe mental health problems, but still appear to view them as simply the more unfortunate ones in society- much deserving of charitable help, fascinating in an academic kind of way, but not somehow as their equals- real people with lives, dreams and desires of their own.

And those of us with ‘common’ mental health problems, anxiety disorders, OCD (my brother’s problem) and depression? Well we are almost certainly believed to be responsible for our actions and quite capable of changing our behavior. This viewpoint is in many ways reinforced by the fact that many treatments require us to actively change our behavior and confront the very fears we are paralysed by. ‘Response prevention’ works in OCD (Obsessive Compulsive Disorder) but it is extraordinarily hard, at least initially, to stop yourself doing something- the very compulsive behaviour that has for many years relieved your anxiety. Similarly activating yourself in Behaviour Activation works in depression, but you may have to force yourself very hard to start doing it. Small goals are helpful at first, like simply being able to get out of bed; but even that can seem impossible. My brother couldn’t do it. He was stuck in his own loop of intense anxiety. Unfortunately therapists can sometimes be remarkably unsympathetic too- if you cannot comply you are sometimes labeled as ‘not motivated.’ The responsibility that the therapist has for helping to motivate you is disregarded.

I’ve learned a great deal since that awful moment in my spare bedroom thirty years ago. Some of it I found out quite soon when I confided in a colleague who was a clinical psychologist. He helped me to understand how my brother had, paradoxically, been able to get out of bed, dress and leave the house when I insisted, despite having been quite unable to do it for the previous few days. That didn’t mean he hadn’t been struggling- desperately trying to deal with the anxiety that manifested itself in obsessional behavior; but he was, temporarily at least, quite disabled by it. I’ve known that helpless feeling too in the times I’ve been unable to get out of bed, get dressed or open a book because I couldn’t find the energy or interest to even try. Sometimes, when I am well, I stop and wonder if I have been putting it on too, because if I can sit here and type a thousand words in an hour this evening, then there cannot be anything wrong with me surely? (despite the number of pills I’ve had to swallow today). One of the many reasons people with mental health problems are stigmatized is that they are not believed when they say how difficult it is to do normal everyday things. It’s patently obvious to anyone with common sense that they can just get on with it- can’t they? I know this is how people think, because I can honestly say that even with my expertise and own lived experience, there are times that I have thought this too. I’ve been there. Real empathy and the power to confront stigma that comes with it, means not only believing that isn’t so, but acknowledging the times you too haven’t wanted to understand why a person with mental health problems cannot do what you would prefer them to do, and why.

My book ‘The Other Side of Silence- A Psychiatrist’s Memoir of Depression, published by Summersdale, is out now.

The problem with resilience

‘Resilience’ is one of those words its hard to avoid at the moment. No one seems to be quite sure what it means, but one suggestion has been that it refers to a person’s ability to maintain or regain a state of mental health in the face of significant adversity or death; in which case it is a quality in which I am undoubtedly lacking. I am very sensitive to the ups and downs of life especially loss. I get anxious and depressed; I’ve had periods off work. I may have successfully survived a lifetime of work as a psychiatrist and an academic, but I’ve also had to use mental health services to keep afloat. Life in the NHS is challenging and I’ve not got through my career without some serious wounds to show for it.

Before the word ‘resilience’ achieved common usage, and its current prominent space on the buzz word bingo board of healthcare, I understood it broadly to be inversely related to the degree of vulnerability conferred by a combination of genetic heritage (see Goldberg & Goodyer)- which influences our temperament, personality and susceptibility to some types of mental health problems, early life experiences and social learning in childhood. If a group of people are exposed to the same degree and type of stresses most will cope, they will demonstrate resilience, but a minority will not. We all have differing degrees of it. Some will develop common mental health problems like depression and anxiety in response to traumatic events, and others less common ones, such as psychosis, but many others will get through relatively unscathed.

The General Medical Council (GMC) with whom I am still registered, although I no longer practice psychiatry, has recently decided that the current generation of doctors is less resilient than those in the past and students need to undergo resilience training in order to be tough enough for the job. I have a number of problems with this view:

  • As an excellent review of the topic by Balme and her colleagues in BMJ Careers recently stated ‘there are no consistent definitions, no standardized, valid or reliable measurements; and no robust studies into what resilience is, what the predictors of resilience are, and whether resilience is related to better patient care.’
  • So if you intend to screen for it please check out this first. If I were starting medical school now (and I still dream I haven’t yet passed my finals) I would want to know, as will others, exactly what it is I am lacking in (given that I tend to get depressed I will likely feel guilty and even more insecure) and whether being without it is going to be of harm to anyone but myself. We don’t screen out people with diabetes from being health professionals. Why should we even consider doing that with people who might be vulnerable to depression.
  • Because in an increasingly hostile working environment the reality is health care professionals are going to experience more mental health problems. They are human beings like the rest of us, although they are not encouraged to admit they need help, for fear of appearing weak. The culture is tough enough already.
  • Please don’t dress up this quality called ‘resilience’ as something for which they must take full responsibility (I have a problem because I lack resilience) rather than the NHS (I’m not very well because I do not work in a supportive and caring workplace). As Balme et al. point out resilience is always contextual – it’s a complex interplay between the person and their environment.
  • Please don’t assume that attending a few short workshops would increase my resilience much either. The evidence for the effectiveness of resilience training is patchy at best, and though there is a suggestion of some positive outcomes, these are mainly from self-report in studies lacking rigorous methodology. It might be more effective to address these problems I have in relating to the world and coping with stress much earlier in life before any thought of being a health professional is even a twinkle on the horizon.
  • What I would need is help to identify coping strategies like problem-solving. There is evidence that this works for people with depression, and those who self-harm in response to life stresses. I wish someone had taught this to me in childhood, it might have helped me earlier. I would need things I can rehearse to put into action at times when life gets tough. But I’m also going to need to be encouraged not feel too ashamed to ask for support and how to identify I might need it earlier rather than later, as so many health professionals who have consulted me have been unable to do. Fast and confidential access to help and support too, not having no choice but to consult a service that I work in, which happens to so many people now in mental health services in the UK.
  • And finally, please don’t assume that just because I’m not as tough as the GMC would perhaps like me to be, I would not be a good doctor. Since my book was published a month ago, I’ve heard from medical students who have feared for their future because they have experienced mental health problems at medical school, worried that they will not be strong enough to cope. Yet these very young people, who have experienced what its like to be a patient can bring a very special dimension to their work. Like me, they know what its like to be on the other side.

We all differ in our ability to deal with traumatic events and the stress of work, yet within that spectrum of abilities lies the potential for us to learn to listen, support and care for each other: as friends, colleagues, some managers and a insightful and proactive occupational health service did for me; supporting me through my sometimes difficult career.

My memoir about experiencing depression during my career in psychiatry is out now: The Other Side of Silence: A Psychiatrist’s Memoir of Depression ‘published by Summersdale.