The diagnosis

It is only 6 words.

‘I think you have polycystic kidneys.’

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

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

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

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

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

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

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

 

 

 

‘Misery’, moods and madness

I find I learn what I think about something as I write about it. Composing words on a screen (I stopped writing by hand when I gave up clinical work- I have a writing corn from years of scribbling in notes) helps me to formulate what exactly it is that is troubling me. But for a few weeks I’ve had difficulty writing anything very creative other than a single blog. I’m well aware I’ve been grieving for my beloved cat; I was feeling very sad but I began to feel a little better again. Then I had a visit from a family member, which stirred up unwanted thoughts (and dreams) about the past.  I began to ruminate again about all sorts of other ‘stresses’ in my life although I’m still not sure how really threatening they actually are, and, for a couple of weeks, my mood plummeted downwards.

 

It’s become fashionable in some circles not to use the word ‘depression’ but to refer to ‘misery’ instead. ‘Depression’ is a contested concept and there is a powerful view that it is primarily a state that is socially determined, a natural response to life events that will respond to social and/or psychological intervention without the need for anything more. Particularly medication.

 

While I wholeheartedly agree that the DSM concept of a unitary ‘depression’ is simplistic and that there are, as the founder of the Black Dog Institute in Australia, Gordon Parker, has suggested, many different ‘depressions’, I really must draw the line at the increasing use of the word ‘misery’. To be described as ‘miserable’ not only means being constantly unhappy but also has connotations of wretchedness and being an awful burden to others. ‘Misery’ as an idea I can just about tolerate, but to be described as miserable because you feel down feels like yet another form of stigmatization of the ‘undeserving poor’ who are unable, or cannot be bothered, to help themselves.

 

And the question is should all experiences of depression now be lumped together as a result of social causes? This is as simplistic to me as suggesting its all down to incorrect or ‘faulty’ thinking or something wrong with the level of monoamines in the synapse. All of these are, for me, similarly discredited ideas. Surely our brains (and our experiences) are worthy of more complex theories than these?

 

What I’ve learned is that there are times when something really seems to shift in my mood, as though some unseen worker 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 and I am full of ‘fear’. When I look in the mirror I am quite sure I can see it in my eyes. There are times when my fear can shift into frankly paranoid thoughts and feelings of wanting to end my life. It’s terrifying and yet oddly familiar at the same time. I’ve been there many times, and I’ve just been there, albeit fairly briefly this time, again.

 

I’m fortunate that I haven’t had depression severe enough to warrant admission to hospital but I’ve had several episodes in my life. Why does this happen to me, but not to so many others who seem to be much more resilient? If I’m just ‘miserable’ perhaps it’s because I’m just inherently weak? For me, this is the obvious conclusion I must draw.

 

What I do believe is that ‘depression’ is a complex, multidimensional experience incorporating everything from profound and painful unhappiness to suicidal thoughts and psychotic degrees of despair. As I’ve said before, ‘depression’ and ‘anxiety’ are also very closely linked to the degree that I don’t find the idea of diagnostic co-morbidity useful at all.

 

The only way I can explain why only some of us seem to become depressed in response to life events is by drawing on the concept of vulnerability. A combination of genetic factors, early life experiences and unremitting life stresses such as lack of support and long-term physical illness add to our vulnerability. Such that, when a torrent of life events come along, those of us who have the greatest vulnerability and lowest threshold for becoming depressed, will get washed away by the waves while those who are fortunately more resilient seem to remain standing.

 

I don’t find it difficult to identify all of those factors in my own life. I’ve used biological (medication), psychological (therapy) and social (retirement from a stressful job) strategies to overcome them. Most of the time now, it works for me.  But there are still likely to be times when my mood just seems to switch gear again and I begin to see an image of the world distorted through a glass, darkly. I’ve never been clinically high, but when I begin to feel better I do sometimes feel an odd surge of well-being to be back in tune with life again.

Just please don’t call me ‘miserable’.

A diagnosis of anxiety

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.