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The invisible patients

lindagask7 Comments

I had been essentially bed bound for 5 days, catheterized, cannulated and weak as a new born, in a ward for the elderly which I will call ‘ward A’, when the first senior nurse I had spied came into the 4 bedded room in which I lay. She chatted and giggled for ten minutes or so with the nursing assistants, who all stopped what they had been doing. I couldn’t hear much of what was said as I wasn’t wearing my hearing aid, but I picked up the gist that it wasn’t work related. Then, picking up her paperwork, and after a cursory glance through each of us patients as though we were invisible, the senior nurse departed again.

Five days earlier the highly professional doctors and nurses in the Emergency Department and medical assessment unit saved my life. I was diagnosed with sepsis secondary to pyelonephritis, given iv fluids and antibiotics and admitted initially to the medical assessment unit. There I was cared for by a pleasant final year nursing student, who told me her name and explained that I would be transferred forthwith to another ward for on-going care. Sadly, that was when things took a downhill turn.

If I hadn’t had anything to compare it with (see below), I might have thought that the care I received in ward A was the best on offer. On arrival I was left in a metal wheelchair in a corridor for 2 hours, with nowhere to rest my head other than a table-top and the body of my husband standing next to me. I’m 61 now, but I was by far the youngest in ward A, and I wondered if that played a part in some of the nurses apparent perception that I didn’t need any help- even though I was acutely ill, apparently rambling at times, and receiving intravenous antibiotics for the antibiotic resistant e-coli bouncing around my circulatory system that I had acquired in another hospital after a routine cystoscopy. Each morning I was expected by the night staff to get out of bed and sit in a chair with no pillow for 2 hours even though I was septicaemic and unable to support my own weight, while I waited for the day staff, a couple of whom chewed gum all the time, to ‘come and do the beds’. After 2 days I rebelled and crawled back onto the bare mattress but they didn’t come any sooner and left me until last. While lying there I heard the lady in the next bed who was barely conscious referred to as a ‘bed-blocker’. Then I refused to get up altogether at 6.30 am and my increasingly stained sheets were left unchanged for 3 days while the dressing on one of my bilateral cannulas, left in for almost a week, began to discolour and smell.

Neither the nurses nor the ever-changing doctors who visited each day introduced themselves and I couldn’t read their name badges as I didn’t have my glasses with me. I gradually learned which nurses to ask if I wanted something, and which ones would ignore me or get inpatient if my request didn’t fit with their all-important routine. Two of the staff nurses and one of the untrained nurses showed me considerable kindness- they told me that they had been hospital in-patients too and knew how important it was to be provided with information. Another left me for 2 hours in acute pain. Three days into treatment I was mistakenly given my medication orally rather than IV, but even this didn’t warrant a conversation with the lead nurse. When I made my first unsteady foray out of the room and down the corridor, fortunately without falling, I couldn’t resist a cynical snort when I saw a poster all about ward A’s dedication to providing high quality patient centered care.

Halfway through my stay, as I began to recover I was transferred to another ward, which I will call ‘B’. I was immediately greeted by the senior nurse who expressed horror at the sight of the tube hanging from my arm and insisted on its replacement. This was a surgical ward, and it was quieter, but only at first, and it soon filled up completely with post-operative patients and quite a few people as disabled as those I had shared a room with before. Everyone there introduced themselves with ‘Hello my name is’. I became visible again- as a person who was sick and needed care and assistance. Each day my bed was remade and I was able to get back into it if I needed, as I was still utterly exhausted. This was the NHS that I recognized but it felt as though I had been moved to a different hospital – not just to another floor. The mattress was even more comfortable (this was not a halo effect- my lower back no longer required a supporting pillow!). I was assured that beds were the same, yet it seemed to me that the people most at risk of pressure sores were sleeping on the oldest and most worn in the hospital. I also realised that the floor of ward B, unlike that in ward A, which had caked on dirt by the side of my bed, was actually clean.

I hate to criticize the NHS. I spent my life working in it, and I do believe it is the best health care system in the world- but I don’t think that means we should assume that all of its failings are related to lack of money and understaffing. I’ve worked in and researched health care long enough to know that isn’t true. From treating NHS employees with mental health problems who were bullied or excluded by managers and staff cliques, I know how much culture and management play a part in how effectively a unit operates, and how leadership style is crucial. That I only once saw a senior nurse in my time on ward A- and I and my fellow patients were invisible to her, was, I believe a contributing factor in why ward A was failing to provide the care it aspired to. In ward B the senior nurses were regularly seen around the unit and were approachable to patients and relatives.

After 2 weeks, I was discharged home where I am still slowly recovering. My bruises are disappearing and my desire to do something to change things has returned in force. I’m not good at being invisible- it’s a life long problem. I will be writing to the Chief Executive of the Hospital Trust … and also suggesting that if any of the Board are in doubt about the state of the beds in ward A they should be invited to spend a night (or two) in them.

Too much brain and not enough thought?

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I sometimes have difficulty getting to sleep- but if you put me in a warm room, turn down the lights and start showing me pictures of brain scans I can guarantee that I will be snoring in five minutes- particularly if its after lunch.

You have probably guessed that I didn’t become a psychiatrist because I was fascinated by how the brain actually works. I was one of those medical students who wanted to spend time trying to understand what people I met were experiencing, and to find the right words or images to describe them. People with mental health problems are just like you and me (and I have them too), but with different ways of making sense of life, which can be sometimes be (for them and those around them) distressing, engrossing, terrifying, or engaging- to name but a few of the infinite possibilities. As a doctor I tried in turn to draw a person into a conversation, and then provide help and care.

What I am not, could not, and would never choose to have been was some kind of clinical neuroscientist. As you might expect from my problem in lectures, I’ve never found the intricacies of neuroimaging, neuropharmacology or neurophysiology, to name but a few of the specialties with that prefix, very exciting. Perhaps it’s because those subjects were so poorly taught to me. I get lost very quickly when I listen to someone who is talking with enormous enthusiasm, for example, about the genetics of mental illness, because sooner or later they go into minutiae that seem so far away from the ‘person’ that my brain moves to its economy setting then switches off completely.

However, young doctors who are beginning their training now in psychiatry are going to get a much better education than I got in neuroscience, and hopefully will be able to appreciate- and understand it-better than I did. This is indeed considered to be a golden time for neuroscience with many important breakthroughs. One of the recent winners of the Brain prize was a British psychiatrist. Perhaps its time has finally come and we will begin to see real benefits for patients in terms of more effective treatments.

Perhaps this will all happen, but possibly not as fast as some might believe.

When I started training in 1980, world psychiatry was moving out of what Leon Eisenberg called its ‘Brainless’ phase, dominated particularly in the USA by psychoanalytic theory, into the ‘Mindless’ era, where biological explanations took over to the point that the ‘medical’ for many became synonymous with the biomedical approach- although many of us remain firmly ‘bio-psychosocial’. Sometimes it feels as though the mental health world itself is split into those (especially psychiatrists) who are determined to show their psychosocial credentials and others who feel the need to defend against the onslaught of biomedicine. One of their favourite battlegrounds is on twitter, where blows are regularly exchanged.

I have certainly met some psychiatric colleagues who are remarkably single track in their biological view of mental illness. One or two of them were eminent neuroscientists whom I would dearly not wish to consult as a patient as it was clear they were yearning to get back to the lab where they could have a closer relationship with a sliced up brain than a living one. But I have come across many others over the years that were keenly determined to try and find new ways of helping people and demonstrated considerable empathy for their patients – even if they were highly skeptical about the role of psychotherapeutic interventions in achieving recovery.

However one of the major problems I have with neuroscience is that despite the amount of money that has been poured into researching the brain there is still so little to show that is relevant to patients. I started training more than 35 years ago, and we have been repeatedly told that the day when this investment will result in real clinical improvement is somewhere just over the horizon.

Psychiatrists cannot simply become ‘clinical neuroscientists’ or even- as some have suggested, neurologists for several reasons. Clinical neuroscience is not yet ready for clinical use. There is still a great deal to do before that point will be reached and the brain is an infinitely complex organ. Furthermore we mustn’t forget that the person who inhabits that brain is very complex too, and lives in an increasingly complex world. I have spent my life trying to help others achieve change, facilitate health care systems to change, and grow and change in my self. None of these were straightforward and I often failed.

Recently a group of eminent American psychiatrists concluded in the British Journal of Psychiatry:

‘our mental health research funding neglects immediate public health needs to focus on future discoveries, reflecting the drive for technological solutions for disorders that are unequally distributed and partly socially determined. Time frames for such payoffs have previously been consistently under- estimated’

Neuroscience may ultimately provide us with some of the answers, but I often feel when I’m in one of those lectures that I would really like to hear more how we can link up a little more across the multidisciplinary divide – and try to understand the interactions between the person, their environment and their brain. Because any real solution is always going to involve some thought about the first two of these. Instead there is so much research (and treatment) still going on in (sometimes idealogical ) silos.

Perhaps the new emphasis on neuroscience will attract more students into psychiatry, as it provides some tangible ‘medical’ credentials of a very high order (close as it is to neurology). But there is always the risk that too much of this will deter those, like me, who were fascinated by what people said, and wanted to be a doctor who listened, thought carefully about the options, discussed them, and then tried to help using every avenue available.

So I think we still have plenty to think about.

I don’t want your sympathy

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Please don’t be offended, but when I’m not feeling well I don’t want your sympathy.

I know that I get depressed. But when someone is being sympathetic towards me it does feel rather like he or she is really thinking more about what they would feel like if this awful thing happened to them too. People can sometimes be really very kind to me when they are feeling sympathetic, and I appreciate that. I can see they do want me to feel better. But that warm feeling only lasts as long as I don’t do something to upset them- like shout at them or start arguing and tell them to go away. They can lose all sympathy for me then, because they really can’t feel very positive about the new angry version of me- and you need to feel ‘good’ about a person to have that warm glow of sympathy for them.

But when I lash out at others that is me too. That is how I can be when my mood gets low. I am irritable. I can remember a couple of times when I’ve seen pity in the faces of people around me. I’ve made them feel uncomfortable and embarrassed. But I don’t want your pity either thanks. Sometimes that has come with the implicit suggestion that I should be able to control myself better, even though I don’t think I can at the time.

What I want is for you to be curious about my life and who I am. To make a connection with me by trying to imagine exactly what it feels like to be me, in the situation in which I find myself. To be empathic. You don’t have to like me to feel empathy for me- you simply have to try and understand how and why I feel and behave the way that I do. To do that you have to have a conversation with me. When a health professional talks to me as though I am a real person we both experience something more meaningful. We meet as human beings- what Martin Buber called the I-Thou interaction. But the way that mental health services operate now, it sometimes feels impossible for anyone to get to know anyone else very well. You might be constantly being assessed as to your suitability for a service and be shuttled through many places for which you don’t seem to be ‘quite right’. No connection is made because it will only be broken again- the professionals retain their detachment. You become an ‘it’ to be processed in the system rather than a person, and you don’t feel helped either.

Some mental health professionals must, I am sure, think this is a better way of working because it feels safe and organized. But ultimately it is damaging and dehumanizing to everyone, both you and them. Sometimes they say they cannot help because you are not yet severely unwell enough- other times because you are simply too hard for them to cope with. Once again, they offer you their pity but nothing else.

Compassion has become a bit of a buzz word in the last couple of years, but I fear it is at risk of becoming commodified like so many other important qualities of health care. When you have compassion for someone you ‘suffer with’ them and you have a desire to relieve their suffering and help them. Personally I think its hard to have true compassion for someone unless you have time to get to know who they are and what their problems are- to have an ‘I-Thou’ rather than an ‘I-It’ encounter with them. There are few truly altruistic people who are universally good and willing to spend their lives helping everyone, regardless of what they know about them. The philosopher David Hume wrote that as humans we are characterized at best by limited generosity; especially on a Friday afternoon at 4.30.

So I fear unless you can truly make an empathic connection with a person rather than simply feel sympathy for them, the extent of your compassion will be limited. It will disappear as soon as they disappoint you. I’ve seen this happen to so many people with ‘troublesome’ behaviour with whom caring professionals have not made that important attempt to understand a life from a different perspective than their own. I have felt it from colleagues when my own behaviour was no longer within ‘acceptable’ limits for ‘depression’.

I think mental health professionals must take time to reflect on what motivates them to take up their profession. Many seem to want to maintain their ‘professional’ distance rather than get emotionally engaged and I fear this is all so easy to do in a fragmented and overburdened system like the one we now have. I have met many who retain the ‘I-it’ perspective as a cloak of (imagined) superiority. Some seem more driven by a feeling of pity for those of us who are more unfortunate in their lives, or move no further than sympathy- which I have indicated above has serious limitations. They do this rather than risk finding out that patients and service users are human too. For if you do that you have to admit the possibility that their ‘afflictions’ may not be unique to them. You may even be susceptible too- and then you would definitely not be satisfied with mere sympathy would you?

My memoir, ‘The Other Side of Silence: A psychiatrist’s memoir of depression is available in bookshops and on Amazon UK here. USA here.

Therapy

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I know many people have enormous difficulty accessing therapy for depression- but as someone who has benefited for it, provided it, and supervised others, I realize how fortunate I’ve been, and how important it has been personally for me. Antidepressants have helped me with many of the symptoms of depression, but I still needed to sort out the conflicts and problems in my life that had contributed to the emotional mess in which I found myself. We keep hearing how there will be medication tailored to suit each individual some day, but I don’t think there will ever be a tablet labeled ‘take two a day to come to terms with how you feel about your mother.’

Over a period of about 12 years, during my twenties and thirties I underwent psychodynamic therapy, something in which I had also had some training – with 3 different therapists. Two of them helped me but there was one with whom I simply could not ‘gel’. Finding a therapist with whom you can make some kind of emotional connection is essential. I was able to learn how the problems in my childhood and the dysfunctional relationships I had with both of my parents were still affecting my adult life. I’m quite sure that, at the time, that was the best type of therapy for me. There were some major unresolved issues from my childhood and adolescence that  interfered with my ability to make stable, trusting relationships. I had also spectacularly failed to grieve for my father, who died when I had just qualified as a doctor. There was a period of a few years in my late twenties when my emotional life can only be described as chaotic. With therapy I was able to access the parts of my personality that I had been desperately trying to keep under control, but sometimes the new and more assertive me who emerged from the chrysalis of therapy was more of  an abrupt and outspoken moth still seeking the light of day, than a perfectly finished social butterfly. Nevertheless talking therapy helped me to address some of the difficulties that I had in the major relationships in my life and embark on what has been a successful second marriage.

Later, when undertaking a course of cognitive behaviour therapy (CBT), I found ways to begin to manage the way I ruminate about being me in this world and to cope more effectively with people in day-to-day life. Therapy was anchored in the present, not the past and I began to learn much more about how my mind actually worked. I could identify my previously unspoken, but very difficult to live up to,‘Rules for Living’ from David Burn’s book the ‘Feeling Good Handbook’, and I began to understand how attempting to live up to my internal very high but often conflicting standards, led to experiencing anxiety in everyday life. It is six years now since I completed that last course of therapy and I am beginning to realize just how long it can take for it to work. I still continue to have new insights into why I am the way I am, and what triggers and sustains those periods of anxiety and low mood, as life goes by. Life is a ‘work in progress’, or at least that is how it has seemed for me.

What most people get offered now in the first instance now is brief therapy, mostly based on CBT principles. For many people that will be very helpful- and when I was supervising a primary care based team of therapists, I saw how effective it could be- particularly if the behavioural aspect of CBT – behavioural activation- was employed first. CBT is very much about ‘doing’ things to feel better. Like setting goals for activities that you may have stopped doing. Or actively trying to address the depressive automatic thoughts that can both trigger and maintain depressed mood- both with the aim of getting you out of the shadow of depression to which you retreated when you lost the energy to fight anymore. In some ways the conceptual basis of brief CBT based therapy isn’t all that different from medication- in that both seek to ‘activate’ either your mind or your body. You get going and take up your life again. You are ‘fixed’ at least for the present as your deficit, of either serotonin or self-esteem ,has been addressed, as Alain Ehrenberg in his book on the sociology of depression, ‘The Weariness of the Self’, clearly describes. And in today’s climate you must of course take responsibility for helping yourself to get fixed- through self-help or presenting yourself at the doctor’s office.

CBT helped me when I was struggling with  my depressive ruminations and it was the right therapy at the right time. But when I was younger, and I couldn’t make sense of who I was or wanted to be, I needed time to build up trust in a therapist, and work on the complex problems from my past that actually interfered with me engaging in therapy in the first place. As I wrote recently, the simple ‘fix’ doesn’t work for a significant number of people who are depressed- particularly those dealing with painful conflicts and the impact of trauma- and we realistically should not expect it to. They need what I was fortunate enough to receive, but it is less available than ever- not only because of cuts, but the prevailing view that depression in primary care is something that can be ‘fixed’. Some people need time to engage, to trust and to work out how to discover who they are and learn how to forgive themselves for even being alive. Some who don’t respond to the simple fix are labeled as having borderline personality disorder- and their anguish is downgraded to ‘distress’ but they too are experiencing something that is only one aspect of the many faceted but hard to define experience that we call ‘depression’. I can assure you that it is real and those who suffer from it kill themselves.

Those who need more than the quick fix are  just as deserving of our attention- and our help.

 

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

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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

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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

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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

lindagaskLeave a comment

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…

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Do self-help books work?

lindagask2 Comments

 

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

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.