At the recent Cheltenham Book Festival, The chair of the mental health panel on which I was appearing to talk about my new book asked me perhaps the most difficult question that I’ve been asked so far.
‘So, there is a scene towards the end of your book where something quite shocking happens. Is it alright with you if we talk about it?’
I felt my chest tighten, as I knew exactly what he referred to. It was the moment in which I confronted my mentally ill brother about why he could not get out of bed. It was, I’m still terribly ashamed to admit, the moment that I hit him. I didn’t hurt him, at least not physically- but I did it, I had written about it, and now I was having to face that moment again- only this time in front of an audience.
‘Yes, you can,’ I replied, feeling my anxiety level rise even more, I knew I couldn’t avoid it.
‘So, can you explain how, given your profession as a psychiatrist, you raised your hand in anger and brought a stool, was it?- down on your brother who was clearly mentally unwell?’
It’s one of those moments when you are forced to really admit your thoughts and feelings. Why did I do it? What on earth was going through my mind? I remembered how upset, frustrated and annoyed I was that he seemed completely unable to help himself, whatever I tried to do to support him. He had spent three days in a room and could not get himself dressed. Instead many of his clothes had been torn up and lay on the floor around him. By that time neither of us were functioning in any rational way. I was no longer thinking as the trainee psychiatrist I was at the hospital down the road. I was an exhausted, tearful and desperate person trying to care for someone who seemed to be refusing anything I offered; And I knew what was going through my head: I really thought he was simply refusing to do anything for me; he was perfectly capable of it, he was just ‘putting it on’ to thwart me. In that moment I treated him like many others had in the past. I was acting as though his problems were not real.
In a recent article in the guardian a medical student also admitted ‘before working in psychiatry, I didn’t think mental health problems were real’. I’m sure that is what many people think- that those who complain of mental difficulties are probably just acting in some way, or are simply weak-willed. That certainly seems to be the prevailing view of those who think that people with mental illness can be forced to find work and financially sanctioned if they do not. Logically this can only work if you believe they have considerable control over most of their symptoms and problems-which infers that they must be, to some degree, ‘putting it on’ doesn’t it? If you are responding to voices or convinced of something that is labeled as delusional, your problems may become more real, but then you may simply invoke fear (‘these people should be put away’); or pity, (these poor people need some assistance) an emotional response I have seen in those mental health workers who are sympathetic to people with more severe mental health problems, but still appear to view them as simply the more unfortunate ones in society- much deserving of charitable help, fascinating in an academic kind of way, but not somehow as their equals- real people with lives, dreams and desires of their own.
And those of us with ‘common’ mental health problems, anxiety disorders, OCD (my brother’s problem) and depression? Well we are almost certainly believed to be responsible for our actions and quite capable of changing our behavior. This viewpoint is in many ways reinforced by the fact that many treatments require us to actively change our behavior and confront the very fears we are paralysed by. ‘Response prevention’ works in OCD (Obsessive Compulsive Disorder) but it is extraordinarily hard, at least initially, to stop yourself doing something- the very compulsive behaviour that has for many years relieved your anxiety. Similarly activating yourself in Behaviour Activation works in depression, but you may have to force yourself very hard to start doing it. Small goals are helpful at first, like simply being able to get out of bed; but even that can seem impossible. My brother couldn’t do it. He was stuck in his own loop of intense anxiety. Unfortunately therapists can sometimes be remarkably unsympathetic too- if you cannot comply you are sometimes labeled as ‘not motivated.’ The responsibility that the therapist has for helping to motivate you is disregarded.
I’ve learned a great deal since that awful moment in my spare bedroom thirty years ago. Some of it I found out quite soon when I confided in a colleague who was a clinical psychologist. He helped me to understand how my brother had, paradoxically, been able to get out of bed, dress and leave the house when I insisted, despite having been quite unable to do it for the previous few days. That didn’t mean he hadn’t been struggling- desperately trying to deal with the anxiety that manifested itself in obsessional behavior; but he was, temporarily at least, quite disabled by it. I’ve known that helpless feeling too in the times I’ve been unable to get out of bed, get dressed or open a book because I couldn’t find the energy or interest to even try. Sometimes, when I am well, I stop and wonder if I have been putting it on too, because if I can sit here and type a thousand words in an hour this evening, then there cannot be anything wrong with me surely? (despite the number of pills I’ve had to swallow today). One of the many reasons people with mental health problems are stigmatized is that they are not believed when they say how difficult it is to do normal everyday things. It’s patently obvious to anyone with common sense that they can just get on with it- can’t they? I know this is how people think, because I can honestly say that even with my expertise and own lived experience, there are times that I have thought this too. I’ve been there. Real empathy and the power to confront stigma that comes with it, means not only believing that isn’t so, but acknowledging the times you too haven’t wanted to understand why a person with mental health problems cannot do what you would prefer them to do, and why.
My book ‘The Other Side of Silence- A Psychiatrist’s Memoir of Depression, published by Summersdale, is out now.
Reading this there are two separate people here, one is a trainee psychiatrist the other is a carer to your brother. As I am to my son diagnosed with schizophrenia, strangely we have both worked in the mental health field. I worked there eventually and gained a few qualifications because of my experience with my son and the sheer lack of support for carers. It is so easy to offer advice to others in a situation you have experienced yourself, but not so easy to take our own advice, don’t you think? What most psychiatrist seem to not recognise in my experience, is the impact caring for someone with a mental illness has upon the carer. We are just ignored!
This is difficult…it took me years to accept the fact that my mother “couldn’t help it”…Not sure what her diagnosis was/is many have been suggested but whenever she’s cruel I know now it’s either the mental disease or physical pain. Knowing this however, doesn’t mean I don’t feel less. But when I can calmly think about it all in retrospect I do accept it.
Linda… I’m a mental health blogger and professional who grew up with mental illness in his family. When it was one of my siblings or a client, I could usually put the other person’s mental health problems in perspective. But it was different as a father when one of my children was affected. It’s one of the reasons I started a website for families http://www.rtor.org and write a blog The Family Side… http://bit.ly/1OItxoF Thank you for your honesty on such a difficult topic. I’ve been there too and can definitely relate. Jay