Lived experience of mental illness

When I call myself a patient and a doctor, they seem like two opposites, two sides of the same table. In mental illness they are often perceived very differently – one with knowledge and power, one suffering and in need of help. They don’t join together well. They make a whole with an empty centre, where the two sides don’t meet. But lived experience of mental illness is held by many in increasing esteem, and is seen as a way to understand the plight of those who struggle with it.

I’m not always quite sure what is meant by lived experience. There are so many aspects, and there is often a striking contrast between the experience of illness and the experience of services. Illness itself varies widely, and it can be very easy and probably not very accurate to make assumptions about severity. The terror of acute psychosis cannot be denied, but the dreary agony of obsessive-compulsive disorder and the loss of hope in severe depression may not be much easier to bear. Anorexia nervosa, emotionally unstable personality disorder, generalised anxiety, dependence on drugs or alcohol, and more –all these bring their own peculiar varieties of torture. There are common factors, but some of these are of more external origin, such as guilt, shame and stigma. Many people will also experience overlap in their symptoms and disorders – we must not forget that the symptoms are experienced, but we (the doctors) invented the disorders (to fit the symptoms), and it can be particularly difficult for those who don’t slot neatly into our categories.

But services are also a much-debated part of lived experience, although I don’t think you need to have been through them to count your experience as “lived”. Any experience is valid, whether “diagnosed” or not, and maybe it is more how we react to it, and how it changes us, that matters. For example, many people are subjected to different forms of abuse, and some of these will develop mental illness – but all of them have lived an experience, that will make them see things differently. I suppose by being alive we have lived experience – the question is whether this is of a type that enables us to understand, and (importantly) help others, either because it is similar, or because it has given us better awareness. Some people will have experiences so negative that they may be unable to process these, or wish to remember them, but they are no less valid.

Going back to services, these raise a whole other range of questions. I don’t think anyone would argue that psychiatric services are under-resourced. I believe that many staff work very hard for their patients, but they are usually working in buildings that are slightly shoddier, often making decisions that are fuelled by what is available rather than what is needed. For patients, often at some of the worst times of their lives, this is just not good enough. For in-patients, there is a loss of autonomy and self-belief, whether or not detained. I still remember, when I was first admitted, the fear that I felt, the assumption that my whole life had changed. My experience on in-patient wards was never easy. I think that I have been admitted to four separate hospitals, so my comments are very general. My strongest feeling, looking back, was that it simply wasn’t therapeutic. There was nothing to do and no-one to talk to. I was merely being kept there until I got better. No-one was cruel to me, and some were kind, but the whole time I wanted to leave. I have read accounts written by others where they describe fear and even abuse, but this was not the case for me. I just felt unhappy, ill and frightened. I have heard of others describing positive experiences, with activities and groups, and good facilities. This sounds far better, but resources have shrunk since I was last admitted, and I suspect that it is rather unusual.

The experience of being an out-patient is, of course, far commoner, and can be equally difficult in different ways. The first and most obvious problem is the wait to be seen. People rarely get referred to psychiatry unless they are in mental pain, and waiting months for help is dispiriting. Even worse, they may be assessed and then discharged, or added to even longer waits for therapy. As a psychiatrist, there is no pleasure in this – it hurts not to be able to provide what a patient needs (although I know it is worse for the patient). But this leaves people still in pain, and feeling let down and angry about the service they have (or have not) received.

In light of this, we must include people with lived experience when planning services, and we must try very hard to include many different people, not just those who want, or are more able, to speak out. It isn’t easy, because lines can get blurred, and professional advice must come from professionals. Just because you have lived experience doesn’t mean you know the best treatment for a particular disorder – but you may know the importance of, for example, explaining all adverse effects, or how different treatment venues affect people. The professional may overlook these.

As for me, I remain annoyingly confused by my position. I used to attend a group for patients and carers, but it was too difficult for me, also being a psychiatrist. It did affect the way others responded to me – friendly, but I was never really one of them. I had a foot in both camps. It is because of this that I am particularly interested in clinician health, because I feel I have some real lived experience, that binds me to others. This certainly doesn’t mean I understand what they may have been through, but I have some understanding of what the fears and obstacles might be, and some practical knowledge that may help. 

But ultimately, all of us have lived experience, and, even if it does not seem as relevant as we might think, it teaches us to listen and communicate. You don’t have to experience all that others have to be able to hear them, you just have to be prepared to try.

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