There is a lot of work on the physical health of people with serious distress – Severe Mental Illness (SMI). The mortality rate for people diagnosed with psychosis is 20 years lower than those without that diagnosis. There are also certain conditions which are more common for those in touch with services – respiratory and cardiac disease and diabetes. Mental health professionals often say the causes of these conditions are ‘lifestyle choices’ – smoking, poor diet and lack of exercise. So treatments are devised so that people will make better ‘choices’ in these domains. What never gets mentioned – although everybody knows – is that some medications can have effects that bring on these conditions. People who take a drug called olanzapine have a much higher risk of developing diabetes than the general population. This is partly because olanzapine makes you very hungry and so you put on weight, a precursor to Type 2 diabetes. But also, most people who take these drugs are poor and cheap food is not healthy food. They cannot afford healthy food. Another effect of these drugs is to slow you down and make you sleepy. People talk of being turned into ‘zombies’. It is little wonder they do not exercise. But this part of the picture is almost entirely missing from discussions and papers on the physical health of this group. There’s a word for this – iatrogenic illnesses. That is illnesses that are the result of medical interventions.
Of course, it can work the other way too. Physical illness can make you anxious and depressed (but not usually psychotic). This makes sense. Being ill is unpleasant. We don’t need to look for aberrant brain chemicals.
In this section of the website, I’m going to do two rather different things. One is to describe a study I was involved with that looked at the relation between coronary heart disease and depression. It was a small interview study – 30 people – but part of a much bigger programme of work. The larger programme was mainly statistical involving over 1,000 people. The second problem to be addressed is rather different. People with disabilities have developed something called the ‘Social Model of Disability’ whereby they say that disability is not the physical illness itself (impairment) but arises from material and social barriers. I’d like to discuss whether this idea could be useful in the field of mental health.
Depression and Coronary Heart Disease (CHD)
All the people we interviewed in the CHD study scored highly on a questionnaire to assess depression. They all had CHD AND depression. The interviews were free-flowing so that people could tell their ‘story’. The major theme we identified was that of ‘loss’. Loss of health and control over one’s body was mentioned by many and this was often linked with aging in general. Something that was mentioned by more than half the men was feeling ’emasculated’ especially in relation to sexuality. We were quite surprised by this as the interviewer was a woman so they must have felt this quite strongly to have the courage to say it in this context. Another thing people disliked was the ‘medicalisation’ of their lives although more than half had not approached their GP about feeling low thinking it would be too complex for a general doctor. Medication had unwanted effects too.
Some people had devised strategies to help themselves. Yoga was a favourite and other forms of ‘alternative’ therapies. Several used the phrase ‘self-talk’ which I had never come across before. It seemed to be a kind of inner dialogue whereby people ‘talked themselves out’ of feeling down. But some saw the whole experience as completely negative. So although loss was predominant there was quite a bit of variety otherwise and we recommended ‘holistic treatment’. Hardly innovative!
In hindsight
I said the 30 people whom we interviewed all scored highly on a measure of depression. And then we thought, but what about those who didn’t? What about those who developed a heart condition but did not experience feeling down? This time we had to rely on records like doctor’s notes which is far from ideal. But we did find people for whom a heart attack seemed to have almost the opposite effects of kicking in depression. They saw it as a ‘game-changer’, a new beginning, an opportunity to rethink their lives and make changes. Why some people reacted this way was impossible to tell from the information we had. But it shows that it is wrong to think you can find out about the relation between physical and mental health only by looking at those who had problems in both domains. It was a fundamental methodological mistake and changed the picture completely.
The Social Model of Disability
Some people think that mental health problems should be treated as disabilities. This is especially so for those influenced by the Social Model of Disability which makes a distinction between an ‘impairment’ and a ‘disability’. An impairment is a physical condition that someone has – it becomes a disability because material and social barriers prevent that person from being included in communities. So someone may have spina bifida or paralysis – that is their impairment. But it is the built environment that is disabling as are cultural norms and representations. This is a positive model because it contains the idea that we can change these barriers – by installing ramps, accessible toilets, road bubbles and getting rid of stereotypes such as ‘tragic’ and ‘pitiful’. The argument goes those disabilities have been medicalised, made the concern of doctors, rather than seen as differences on the whole human spectrum.
Well, many people with mental distress think that their lives have been medicalised too. And that they have the right to live as full citizens. But there are some problems. What exactly is our ‘impairment’? Some people say that, of course, it is the illness. But the whole idea of ‘mental illness’ is controversial. There are no tests for it, no biomedical markers, it is inferred by doctors from what people say and how they behave. So, if it isn’t the ‘illness’, what is it? Some say it is just a myth to keep undesirables out of the way. Others point to issues such as ‘cognitive deficits’. But people have long objected to being seen as a conglomeration of deficits and want a focus on their strengths. So, then we have the idea of a ‘social model of distress’. I think there is a lot of good work here but nobody has yet come up with a theory of what it is about ‘the social’ that drives people mad and anyway that does not resolve the question of the ‘impairment’. For myself, I don’t think mental distress is like a broken hip or sight loss. But psychiatry is so much our default language for speaking about distress that it is quite difficult to articulate what it is. And, like physical impairment, it is not uniform.
So this is tricky but I think there are two positive things. One is the idea that we can change the environment – material and symbolic – to be more inclusive and celebrate difference. There are many things we know that impact mental troubles – poverty, racism, patriarchy, a hostile environment of many kinds. We are talking large scale social change. But it would benefit people far beyond those living under the description of a psychiatric label.
Second is activism. There is a disabled people’s movement and a user/survivor movement, as I have said. There is plenty of room for these to work together for mutual benefit. Both groups have been medicalised and both have been excluded. Neither are well-funded so an alliance seems a good idea.
Do I think madness, whatever it is, will ever go away? No. There never has been and never will be a perfect society. But that does not mean that we can’t make things better.