Tag: Patient-experience

Going North- the problems of trying to lead a disciplined life.

lindagask7 Comments

It is high Summer in Orkney, and I am back again in Scotland once more.

When things are difficult in my life I’ve always headed North. I don’t mean the North of England. That’s pretty much where I come from now. I’ve lived and worked there long enough to be a real ‘Northerner’. When I go South to London I like to broaden my accent a bit for the hell of it. But for most of my life the real North has only existed somewhere in my imagination- a magical place that never seems entirely real until I arrive there- and when I do it isn’t because I’ve reached some point on the map. Its more than that, it’s the sense of peace that infuses first my limbs and then seeps through my body. My heart rate slows down. I can feel the blood pressure in my arteries falling as the valves that constantly drip adrenaline into my system and contribute to my persistent feeling of anxiety are closed down one by one. Not by medication, but by nature. I can stop moving. My skin begins to tingle and itch as the wounds beneath, the invisible ones I’ve carried around most of my life, begin to heal.

Recovery isn’t just about absence of symptoms. Researchers who deal in the currency of symptoms talk about how in depression we pass from ‘normalcy’ (whatever that is) to the experience of ‘disorder’ followed hopefully by ‘response’ to the treatment, ‘remission’ of symptoms (in which they lessen or disappear) and then ‘recovery’, but many of us have ‘residual’ symptoms which wax and wane over time. Similarly psychological therapies are not designed to achieve a ‘cure’ in medical terms. We have to find ways of living with from day to day with our symptoms, problems and unresolved psychological conflicts. Health professionals rarely ask ‘How do you get through the day?’ yet that is such an important question. Every morning when you finally get out of bed, you have to face several hours of being, doing, feeling and interacting before you can get back under the duvet. For me, how to survive this daily experience is central to the process of recovery.

But I’ve never been very disciplined and in many ways I am still a rebellious child. I dislike going to bed. Without my husband to get me up to bed I can sit lost in my thoughts, reading, surfing the net or watching the TV for hours. I can lie in bed half the morning like a teenager.

I have this intention every time I come up here that this time I am going to get myself into some kind of healthy daily regime. There is so much information about the kind of lifestyle I should lead if I am going to learn how to manage my recurrent downswings in mood and loss of energy, which are the first signs that I might be becoming more severely depressed again. I know there are some things I can do to stay well. The list is endless and I know there is some evidence for all of these things: taking regular exercise, getting sufficient sleep for my age, avoiding alcohol and other ‘substances’ and eating a “Mediterranean diet” (not always easy in Scotland- never mind if you are on a low income). I also know that, given my propensity for relapses I should stay on the medication I have taken, in one form or another for more than 20 years, as well as the other tablets I have for my physical health problems. Keeping my mind on track is essential here as I am alone most of the time. It’s a great place to practice the skill of allowing the boxes containing ‘difficult thoughts’ to pass across on the horizon of my mind without having to unpack them. I know there is a lot of rubbish in them that really needs to be thrown out. If I allow a worry to take over my mind here its quite difficult to elude it. My mood soon begins to spiral downwards. These are the skills, based on Mindfulness I began to learn in the Cognitive Therapy I underwent a few years ago, to help manage ruminative thoughts.

I must get to bed before midnight and up before 8. Eat healthy meals that I have cooked myself. Take some exercise every day. There is a voice inside me saying ‘if you do these things you will not only be well, but you will be good’. But why do I have to be good? I find it impossible to be good all the time. Can anyone truthfully manage that?

So I cannot tell you a satisfying tale of how I did all of these things that I know should help me and they did. I can only say that when I am able to do them, they do.

I am gradually learning to forgive myself for failing to always live up to the targets I set myself for each day. I made them, so I can break them. I don’t have to spend every hour doing something useful- where does that idea come from? I have a choice. It doesn’t really matter if I don’t get any cleaning done until just before I return to Yorkshire. The North is a place where I find it easier to be me because it reflects something about what is inside me- I can see myself reflected in the lochs, the moorland and hills- a little chilly at times and not to everybody’s taste, but perhaps worth discovering. We all have to find a place where we feel we can be ourselves. I need to learn how to carry the essence of it back South with me. The longer I am here, with each visit, the easier it is becoming.

My latest book’The Other Sides of Silence- A psychiatrist’s memoir of depression is out now and also just published in  USA

The diagnosis

lindagask4 Comments

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

lindagask1 Comment

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.

The morals of medication

lindagask9 Comments

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.

 

 

 

 

Authenticity

lindagask2 Comments

Oxford dictionary: Authentic – adjective: ‘relating to or denoting an emotionally appropriate, significant, purposive, and responsible mode of human life’.

My 60th birthday has come and gone. My body is beginning to fall apart but I still feel 16 inside. Life is a ‘work in progress’, or at least that is how it has always seemed for me. I get depressed from time to time and it’s such a truly awful experience that it’s hard to believe there can be any positives from suffering it, even if evolutionary biologists suggest there might be. But I recognise that its impact on my life has enabled me to begin to see more clearly what is really important : my relationships and my writing.

When you are someone with mental health problems it can be difficult to work out who is the real ‘authentic’ version of you. Even if people aren’t really talking about me, am I the oversensitive person who will always think they are? Or maybe that is one side of me, amongst many different faces. There are times still when I wonder whether the medicated me I’ve been for so long is the ‘real’ me, or are these tablets simply suppressing the person I truly am? When I worked in addictions people would ask me the same kind of questions.

‘Who will I be without the alcohol? Will I be able to live with myself? Will other people?’

‘Why am I so different when I’m drinking heavily? Yet sometimes that feels like the real me- the one who is trying to get out and cause havoc?’

One of my patients used to give me brutal feedback about the colour of my nail polish (I had a gothic period- which on reflection I’m still passing through) when she was going high. When she was well she would insist on apologizing when she really didn’t have to- she was just expressing another, very perceptive, part of herself that was usually kept in check.

When my mood is irritable and agitated, I can come out with the kind of comments that would be much better left unsaid- and certainly not shouted. From psychodynamic therapy I learned about the parts of me I was repressing, but they don’t have the best of social graces. In cognitive therapy I found ways to manage the way I ruminate about being me in this world. It’s far from a perfect fit, but who is to judge what is perfect?

Damien Ridge highlighted 4 different aspects of recovering from depression after talking to people who were, or had experienced it. (I am talking here about recovery in its original meaning as a personal journey not a service driven imperative).

  • Preventing depression from occurring in the first place
  • Limiting the impact of actual episodes of depression
  • Recovering from the effects of depression in the short and long term
  • Re-working the self so that is more functional or authentically felt

I haven’t succeeded in preventing episodes and, as one reviewer commented about my book, perhaps it would be fair to say my story illustrates well the limits of medicine. Neither talking nor tablets, separately or together, have provided a complete answer. My current doctor thinks I would have been in hospital over the last few years without the treatment I’ve had, and I think he is probably right. I can limit the impact of episodes now, and I’ve been able to live and work while experiencing bouts of depression.

I cannot always remember what the ‘depressed me’ is like until she wholly inhabits me once more. I can only say that being ‘her’ is not a good feeling in any way, it means feeling cut off from the rest of the world, unable to communicate, as though there is a thick ground glass screen between me and the rest of life. I can hear and see something of what is going on but I don’t feel any part of it, and it fills me with fear. I don’t want to be her, and so far I’ve managed to get away from her much of the time in the last 20 years, but has that been the right thing to do?

The writer Will Self, who is fiercely against taking tablets for depression has said that ‘from the stand point of the 20th century, to be melancholic is good mental health’. He has been able to employ his own personal experience of it to gain insights into extraordinary ways of viewing the world. Would I have had a different perspective on life if I had persisted in trying to cope in a different way? For instance by writing, painting my way out of depression or seriously learning how to meditate – or even, dare I say it, attempting to rediscover the faith I had as a teenager?

The problem I have is that it’s been nigh on impossible to open a book when I’ve been severely low, never mind sit down at a laptop and type. I would love to have been able to write my way out of depression, but it’s not possible for me. I can only work when I’m ‘well’ and I cannot help but see the world through the lenses of the treatment I have had- the ideas I have taken on board from therapy, and in particular the medication I still swallow every morning and evening. They certainly seem to alter my perception of the world in some way to make it a less hostile place.

For thirty years my major role in life was being a doctor. It both satisfied me and punished me. The thought that I might ever have to return to work again as a doctor fills me with anxiety, but I’m still registered with the General Medical Council. The alternative was being ‘erased’ which sounded like I had done something wrong, when I hadn’t. The act of giving up my work as a health professional stands in the way of what I’ve felt was my raison d’etre – helping other people.

Last month, more than 2 years after retiring, I shredded all the paperwork relating to my annual appraisals over the last 15 years (or whenever they began). There is no going back even though I miss that sense of being part of the ‘real’ world on the front line of health care. Now I have time to find out more about the person I really am and what I want to do next. There is some important unfinished business with my ‘self’.

“The privilege of a lifetime is to become who you truly are.” C.G Jung

My memoir on depression and psychiatry: The Other Side of Silence- A psychiatrist’s memoir of depression, is available now.

 

 

I’m a psychiatrist and I live with depression

lindagask29 Comments

I am a psychiatrist, and I’ve had depression on and off for most of my adult life. I’m now retired from practice. I’ve written about depression in a book, and people are saying how brave I am to ‘come out’ and say it. Yet if I had written about having arthritis, or some other physical condition, no one would have described my ‘coming out’ in such terms. Why should it be such a surprise that a a person who worked as a consultant psychiatrist for almost 25 years, and has spent her life researching and teaching the subject, should have first hand experience of it herself? Probably because, in the health professions, the last thing we usually want anyone to know, particularly our colleagues, is that we too are vulnerable to exactly the same stresses and problems as our patients. We like to see ourselves as strong; indeed maintaining our position on the career ladder often seems to depend on that. There is stigma related to having depression, even though mental health workers profess that they are always ‘fighting’ it. Depression is something that others suffer from, not us.

It is exactly this ‘us’ and ‘them’ attitude that I set out to challenge in the book. It started off as a memoir of my own fairly extensive treatments for depression, both with medication and psychotherapy. However as I began to write it, the close parallels between my own experiences, and those of the people I had tried to help throughout my professional life just became more and more obvious to me. There certainly wasn’t a clear boundary between my own experiences and those of my former patients. We all had complex lives- experienced loss, grieved for those who have gone from our lives, felt lonely, wanted to be loved, and sometimes felt compelled to self medicate with alcohol to ease our distress. Some of us made the same mistakes in our relationships over and over again. Many of us wanted or even tried to end our lives. The stories I tell in the book are taken from my own work as a psychiatrist but have been extensively altered and merged to create people who are true to life, but not ‘real’ case histories. However my own story is very real indeed. It wouldn’t have been appropriate to have been so open when I was still practising- when people came to see me the focus was rightly on their problems not mine. When I was unwell I withdrew from seeing patients until I was recovered. I’ve never tried to hide my illness from colleagues. I’ve just never been quite so public about it.

So far, I’ve had some interesting reactions. As I mentioned above, I’ve been described as brave by some, but others are still clearly unsure what to say to me. When I’ve talked in the past about treatment, in particular the fact that I’ve taken antidepressants now for the last 20 years, I’ve certainly picked up from some of my colleagues that ‘this isn’t the sort of thing one talks about’. Why not? Isn’t this exactly what mental health professionals talk about every day? How can we challenge stigma in society if we cannot face up to our own tendency to stigmatise both our colleagues and, even now, our patients?

I have listened to junior members of staff describe people with depression who are not actively suicidal, or psychotic as the ‘worried well’. I’ve been told that depression is not a ‘severe’ mental illness warranting more investment of psychiatric and mental health nursing resources. I’ve read articles written by my colleagues, which describe it as ‘medicalising misery’. Only people who have never experienced the pain, despair and hopelessness could talk about depression in such terms. I’ve spent my life challenging such attitudes. I made it as far as being a Professor of Psychiatry, despite repeated episodes of depression. I know I’ve had better treatment than many people ever receive and my aim has always been to improve access to, and quality of care for depression. I’ve managed to live with depression and found ways of coping with it- though that has been far from easy. That is also what my book is about. I refuse to be ashamed of it.

Nobody should be.

My book, ‘The Other Side of Silence: A Psychiatrist’s Memoir of Depression’ is published this week by Summersdale.

Ambivalence

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I wish they had taught me about ambivalence at medical school. It would have made my life immeasurably easier if I had understood it earlier. Instead I was quite a long way into my career before I really began to see how important it was both to my patients, and to me personally.

I was taught what to do for each clinical problem with the expectation that a person would be ready, and willing, to accept my advice. If he or she wasn’t, they were something of a nuisance, indecisive, unable to recognise what was good for them. ‘Oh she’s ambivalent about it,’ I would be told if a person was shilly-shallying around. Ambivalence as a concept was confused with indecision. But it isn’t. It’s something much more than that. It’s about wanting to have something at the same time as not having it. Wanting to be thin, but to eat a large slab of chocolate every day.  Wanting both the benefits of sobriety and inebriation. Even wanting to be both dead, and alive at the same time. I know from talking to people who have tried to kill themselves and failed, that they sometimes wanted to be both still here among the living, yet dead and out of their suffering too. Some of them changed their minds as soon as they had acted to end their lives and came to seek help. Ambivalence underpins so many of the problems people have brought to me, and my own difficulties too. I was an ambivalent medical student, and for many years an ambivalent doctor. I wanted both to belong to a profession and all the benefits that come with it, and not to belong because of the cost to me personally and emotionally.

If you haven’t read Kenneth Weisbrode’s recent short book on the topic, entitled ‘On Ambivalence’ I can highly recommend it.

‘Ambivalence lies at the core of who we are. It is something more subtle, and more devastating than human frailty. Weaknesses can be remedied. Ambivalence comes, rather from too much ambition. Desire begets dissatisfaction, and vice versa. Optimization becomes a fetish. Wanting the ‘best’ means that we must have both or all and are reluctant to give up any option lest we pull up the roots of our desire. That is why ambivalence is so hard to confront, understand. Or master. And why it can be so disastrous.  Most of us know this. Yet we continue to deny it.’ (p2)

 

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The person who is ambivalent about their eating, or drinking, or lifestyle ( add ad infinitum) is not only unable to choose the from the options they have in front of them, but refuses somehow to admit that there is even a choice to be made at all. It’s both a painful yet oddly pleasurable place to be. We cannot have it all, but still somehow  want to believe that we can. We don’t have to decide what to do, to change our lives, because there isn’t a decision to be made. Yet we suffer because we struggle to live what is an impossible existence, only we don’t admit how impossible it really is.

If I had understood this when I was younger, I might have been able to recognise how much suffering is rooted in ambivalence. I began to understand it when I worked in addictions, and later with people who had eating disorders.  I’ve talked to many people who have felt judged rather than helped by those they have consulted; who have been labelled as weak because they are unable to ‘choose to change their behaviour’, rather than essentially ambivalent about life and what they wanted from it. I was influenced by Bill Miller, who first described Motivational Interviewing in the 1980s. I remember reading about how the clients of the clinic where he worked were routinely asked if they were willing to accept the label of alcoholism and accept treatment. That was exactly what I witnessed as a junior doctor:

Consultant: ‘So do you think you are an alcoholic?’

Patient : ..’No… I don’t’

Consultant: ‘Are you prepared to attend AA?’

Patient: ‘Why would I want to do that.?’

Consultant: ‘Well, if you aren’t prepared to admit that, you aren’t motivated to accept help. Come back again when you are.’

We may say it doesn’t happen quite like now, but it does. A person who doesn’t see the need to make a decision about taking up therapy and attends only intermittently is rapidly discharged for being unmotivated.  Instead of trying to understand their ambivalence and empathising with the problems they are experiencing which make it impossible for them to contemplate a decisive response to their problems, we treat them as wasting our time. When he first described Motivational Interviewing, Miller emphasized the responsibility of the therapist in helping the client to acknowledge and explore their ambivalence. When the person is ‘unmotivated’ we are discharged, as therapists, from our responsibilities.

I was personally fortunate. I had a therapist who was prepared to engage me in acknowledging that I both wanted to succeed and to fail in my career, and ultimately to both to live and to die. I’m still ambivalent, but I don’t want to talk about that now. There isn’t time. My cat is currently driving me crazy, wanting to be on both sides of the back door at once. Now that’s ambivalence.

 

Reassessing ‘assessment’

lindagask9 Comments

One of the side effects of having more time than I used to is that I begin to brood over the meaning of the words I once used without a second thought. It particularly happens on long walks without the running commentary of the radio. In a recent bIog I talked about ‘recovery’. Now I’ve started to think about a word I would never have given much more than a second thought too as a working psychiatrist- ‘assessment’.

The problem with many words in mental health is that they can begin to assume alternate meanings. Use of the ‘active’ and ‘passive’ tense can be important too in conveying a sense of who has the power. There is something very passive about being ‘counseled’ and the act of counseling has itself taken on various meanings from receiving counseling as ‘therapy’, wise counsel as ‘advice’ and being ‘counseled’ as a form of disciplinary act.

I don’t remember as a psychiatric trainee being specifically trained to carry out a ‘psychiatric assessment’. I was taught how to master a psychiatric interview, which considered of ‘taking the history’ (which can sound and feel rather like a rather one-sided action on the part of the doctor, removing something from the patient) and carrying out a mental state examination. I soon learned that for the interview to be effective I had to spend as long actively engaging the patient in thinking I was a person with whom they would be willing to share their experiences, as asking all the questions that psychiatrists are (in)famous for. Later on, I began to research how both GPs and psychiatrists approach the ‘consultation’ as the meeting between professional and patient is commonly known in primary care. Indeed actively ‘consulting’ the doctor conveys more power to the patient than being interviewed or assessed by them. I spent hours, days and weeks observing interactions for my research. I remember the patient who, when asked by the psychiatrist whether he knew if he had had a traumatic birth quite reasonably replied ‘well the Battle of Britain was on at the time doctor’.

Somewhere along the line, the psychiatric interview or consultation became the ‘assessment’ with a list of questions to ask the patient. Changes in the examination system of doctors reinforced this, with the shorter structured OSCEs (Observed Structured Clinical Examinations) with role-played patients, that are probably fairer to the candidates, but reward marks for asking the ‘right questions’ when ‘assessing depression’, ‘suicide risk’ or ‘hallucinations’. I’m as guilty of this as anyone. I teach suicide risk assessment skills. The blurb for my latest book on depression mentions assessment too.

So what’s the problem I have with assessment? Well, when a person assesses another they are implicitly making a judgment about their suitability for something or their ability to achieve particular goals. As a patient I have been assessed for therapy. That’s fair enough perhaps when there are indications as to whether or not a person might benefit rom that intervention. Psychologists regularly carry out assessments perfectly reasonably as not everyone will benefit from their specialist expertise. But how often is this mutual assessment? Are you a person I could talk to?

And so often now I see mental health assessment as a tool to exclude rather than seek to help a person find the help they might benefit from. Its more ‘this person isn’t psychotic or actively suicidal so there is nothing we can offer them’ rather than, ‘this person is consulting me. They are extremely distressed. They don’t understand what is happening to them. How can I help them?’ In our increasingly fragmented health care system everyone is carrying out assessment according to their particular ‘criteria’ while the service user understandably feels they have been ‘assessed to death- when is someone going to help me?’

Can we move away, in mental health care, from this culture of assessment back to one of a consultation, which David Tuckett and his colleagues first described many years ago as the ‘Meeting Between Experts’?

I am the expert in what I am experiencing. You are the expert in what might be effective. In consulting you and providing you with all this very sensitive information about my inner life, I’m an trusting that you as a professional will be able not only to say if you will be able to help me personally, but also that you will do your best to help me access what I need.

I really need your assistance now to navigate this increasingly hostile system of care. I am asking for your help.

Strategies for Living

lindagask4 Comments

In the last few weeks, while I’ve been largely alone in Orkney, I’ve been aware of having to cope with my mood and thoughts from day to day and reading about how people with mental health problems cope on Twitter and support each other.

I’ve also been reminded of something I read many years ago.

At the turn of the millennium, the Mental Health Foundation carried out some service user research and produced a report called ‘Strategies for Living.’ Over 400 people had completed Knowing our own Minds – a user-led survey of alternative and complementary treatments and therapies in mental health and Strategies for Living reported the findings from interviewing 71 people with experience of mental health problems in depth. This was a really positive piece of work, which highlighted the particular activities and experiences which people with mental health problems found helpful in coping with their everyday lives: from on-going survival strategies, such as the need for financial security to crisis strategies such as making contact with friends or professionals, ways of controlling symptoms such as taking medication, having therapy, taking exercise or using a Walkman (yes it is a few years old) to distract from hearing voices, to ‘healing strategies’ through religion and spiritual beliefs to complementary therapies.

Relationships with others were key. Several common themes could be identified:

• Acceptance
• Shared experience… shared identity
• Emotional support… ‘being there’
• A reason for living
• Finding meaning… and purpose
• Peace of mind… and relaxation
• Taking control… having choices
• Security… and safety
• Pleasure

Mental health services were largely absent from the accounts that people offered although some individual professionals clearly offered a great deal of valued support

Why am I reminded of this now?

How we cope from day to day is a very personal phenomenon. There are of course some common strategies that people find helpful and these were the ones reported in Strategies for Living.

However there are also some other ways of coping that were not reported in here. The strategies that people do not always want to admit to. I know some of these intimately. Despite growing up in a household of heavy smokers, I’ve never tried a cigarette, but I watched my father consume 40 a day as his own personal way of keeping life at bay. Excessive drinking is something I’ve always suspected I could sink into and I’ve consciously tried to cut down in recent months. It isn’t always easy. I spent some of my career working in alcohol services and I know how hard it can be to withdraw from alcohol and other substances. But there are other ways too that we cope with how we feel: eating, or not, over exercising, self-harm and self-injury , spending every night out on the town or shutting ourselves away completely from the world to the point that we feel completely isolated and ultimately brooding about strategies for dying rather than living. Suicidal thoughts are themselves a coping strategy. Knowing there is a way out when it all gets just too much.

My concern with much of the self-help literature, some of which sits on my own bookshelf unopened, is that it makes various assumptions:

  • We actually want to change, and stop using the sometimes self-destructive ways of coping we find helpful in day to day survival.
  • We can find the resources to be able to do that.
  • We have the material resources and social capital to be able to adopt some of the positive strategies people suggest to us, such as time, money and a place to live to start off with.

Its difficult to adopt new ways of coping until you have acknowledged what you will lose in giving up the other strategies, the ones health professionals would prefer you to unquestionably ditch. Such positive ways of coping cannot be prescribed (such as in the advice to ‘go home and have a warm bath and a cup of tea’ that currently seems beloved of some crisis support teams- actually I didn’t  see these even mentioned in Strategies for Living either). Health professionals need to start from where we are at now. What have we found helpful in the past? What do we do now to cope? What is difficult about changing ? And avoid being judgmental if they want us to be honest.

The problem with feeling depressed is that it involves rumination. Indeed in some cultures it is considered to be a problem of ‘thinking too much’. We become aware of our thoughts, and struggle to cope with them minute by minute. I certainly have some obsessional features to my thinking, and I’m aware that if the day doesn’t go ‘right’ in some often hard to clarify way, I can feel as though everything has gone ‘very wrong’. I have to mentally restart the day in some way. These thoughts can be painful and repetitive and I seek ways to avoid them. Distraction is probably the most effective way I’ve found and I deeply resent that some psychologists I’ve met seek to denigrate such an effective coping strategy as a ‘safety behaviour’ in CBT speak. Hell- give me a break- it’s what I find helpful!

There are many different strategies for living and quite a few for dying.
Help me to find the ones that fit me best to help me survive.
Don’t advise, lecture or proselytize.

A diagnosis of anxiety

lindagask2 Comments

On one of those occasions when I peep around the screen at what my GP is typing I see a diagnosis of ‘anxiety with depression’ at the top of the screen. I’m not sure how I feel about that. I suppose I’ve always thought about my problems as being more to do with depression than anxiety. But regardless of the idiosyncrasies of the recording system that GPs use (for the uninitiated, the Reed codes used in British General Practice don’t much conform to DSM or ICD), I think it’s probably right. In my life, low mood comes and goes, while anxiety has been pretty pervasive at the times when it hasn’t progressed to frank agitation.

This all comes to mind recently because the National Institute for Health and Care Excellence (NICE) just published its quality standard for anxiety disorders. It has information on all the different disorders neatly laid out- with specific pathways for Generalised Anxiety disorder, Panic disorder, Obsessive Compulsive Disorder, Post-traumatic Stress Disorder etc. At the same time there has been the usual and continuing debate about the validity of diagnosis in psychiatry in the twitter sphere, in which I occasionally participate.

My problem with NICE guidance is that there are so many different pathways for the different diagnostic categories of what are called Common Mental Health Disorders– which consist of all the anxiety disorders plus depression. Some mental health professionals disparaging call these ‘minor’ mental health problems and the people who suffer with them the ‘worried well’. I’ve unfortunately heard psychiatric trainees use those terms.

Warning: don’t ever use these terms in my presence, I can’t be responsible for the consequences.

If you add in the other common mental health problems in the community, use of drugs and alcohol which many use to self-medicate for these ‘minor’ problems, you have a complex bundle of guidelines for a large section of the community (around 15%) who mostly get their mental health care from primary care. In common with the main classification systems, NICE treat all these as distinct diagnoses. If only life were so simple.

The problem is that in the real world they all overlap, co-occur and change around over time much in the way that my own symptoms have done since adolescence. ‘Anxiety and depression’ is the commonest mental health problem that GPs see. Mixed in with that may be some phobic symptoms, panic attacks, obsessional symptoms along with other features which suggest post-traumatic stress such as hypervigilance. Add to this the common ‘co-morbidity’ with drugs and alcohol, and the difficulty some people with these problems additionally have in social relationships which equates to some degree of personality difficulty, we have the potential to label a person with multiple diagnoses. At the other extreme we could say, these ‘disorders’ are all part of the same problem. You are suffering from something called ‘life’.

My view is somewhere in the middle, but I struggle with it. I’m a supporter of the need for psychiatric diagnosis and anyone who doubts the need for it should first read Robert Kendell’s classic book The Role of Diagnosis in Psychiatry. But to say that doesn’t mean we’ve got it right, or that the same system is appropriate in all settings. In my work with WHO, I’ve helped towards developing the ICD-11 system for primary care, which is a good deal simpler than anything DSM can ever think up. However what is key for me is that a diagnosis is only a construct,

as Kendell puts it:

‘thoughtful clinicians are aware that diagnostic categories are simply concepts, justified only by whether they provide a useful framework for organising and explaining the complexity of clinical experience in order to provide predictions about outcome and to guide decisions about treatment.’

Clinically I have found the NICE stepped care model useful: severity of symptoms is the key to what intervention is likely to be helpful. But my approach to helping people has been to start with their life, their problems and hopes and concerns and help them to work out goals for how they would like it to be different. To work towards this by both finding out exactly what they are experiencing, and have been through, and then use a range of therapeutic tools from medication, psychological and social interventions in an essentially transdiagnostic way according to what is likely to help, both from the evidence base and their own past experience and preferences. This has been how I’ve supervised step 2 workers in Improving Access to Psychological Therapy (IAPT) in Salford where I worked for several years, to deliver care for people who might have ‘anxiety and depression’ in some kind of admixture, but had complex life problems. I’ve utilised a very simple set of ‘working’ diagnoses which can easily change over time.

I think we do underestimate the importance of anxiety, but it’s not just that we fail to recognise anxiety disorders. Anxiety pervades all of the common mental health problems except for in those people who experience depression without it. There is a significant genetic component which I can easily identify in my own family. Anxious symptoms in the presence of both bipolar and unipolar depression tend to make the outlook worse and suicide more likely.

Recently, since I gave up the day job, I’ve been feeling much less anxious. This was (unhelpfully) commented on by a colleague whom I hadn’t seen for a while who decided to mime how agitated I used to be at times. I have to admit that I was (strangely) usually worse when in his company. However this coming week I have to have more investigations for my physical health and the familiar churning stomach, sweating and tension have returned once more. Hopefully, after tomorrow, I will be able to return to the combination of exercise and mindfulness which I have recently found helpful in managing my ‘anxiety’.

Fingers crossed.