Licensed to Ill?

Most of my posts on this blog attempt to reach some conclusion. Not this one. I haven't managed to come up with a neat propositional statement that does justice to what I think about the topic. This blog-post is about the term "Mental Illness", specifically the "Illness" bit, and more specifically the question "is it appropriate to say 'mental illness' to talk about the sorts of misery that some people experience under the rubric of 'mental health problems'?"

On one view it's an open and shut case: the answer is "No!" Virtually none of the experiences so inadequately described by the DSM can be regarded as "illnesses"; they are "problems" at most, and they are caused not by a brain malfunction, but by life experiences. This view is held by some to be the more sympathetic and humanistic one. Its advocates are fed up with being, or seeing others, fobbed off with a label and some pills. They're fed up with people being written off as "chronic" and with the lowered expectations that lock service users into institutionalised and restricted lives. I largely agree. I have seen how people get treated in hospitals; how badly resourced services warehouse them and are able only to offer paltry shadows of what we would properly call "care". Calling people "ill" can work the neat trick of attributing all that is wrong with a person to the illness, and overlooking the problems caused by the ways they have been treated.

How can we prevent the "illness" debate resembling a plane crash?

Where's the debate then? Why would I even ask whether "illness" is a relevant term when there are so many people (perhaps you are one) for whom it very definitely isn't? Practically I don't generally have to adjudicate over whether people are ill, as a psychologist I am more concerned with understanding and influencing the things that they think. Thought can obviously be influenced by physical pathology but I am not medically qualified to treat that, so you can see how it might be in the professional interest of people like me to limit the use of the word "illness".

Theoretically I used to be convinced by the argument that disease or illness is what we say about problems where there are not only symptoms (unpleasant experiences) present, but also agreed-upon biological events which explain them. This argument is based on a definition sometimes attributed to Rudolph Virchow, who died over 100 years ago but it is arguably only relevant if you think that the criteria by which we decide can have been fixed back then for all eternity. Furthermore, it assumes that we can only say "illness" when we have agreed on the explanation.*

Unfortunately, it's a simple definition which no longer seems adequate for our purposes. What counts as an illness is not only a question of similarity to other things we already call illnesses, but also of how far we choose to extend the use of the word illness. As a clinician rather than a sufferer, I don't feel confident that I can define illness from the outside and the ultimate criteria for helping me to do so don't appear to exist. The dictionary definitions are circular and unhelpful:

Mirriam-Webster: "an unhealthy condition of body or mind"
Oxford: "a disease or period of sickness affecting the body or mind"
Dictionary.com: "unhealthy condition; poor health; indisposition; sickness"

As if to make my point for me, there is an interesting symmetry at work. Activists seek to call some experiences "illnesses" even though there is doubt over whether they meet Virchow's definition. In the case of M.E., for example, sufferers are horrified when doctors suggest that there isn't a biological underpinning that would warrant an "illness" designation. They feel ill, and suggest that we should start from this place in determining the status of the diagnosis.

Meanwhile, in mental health, many first hand accounts describe something so like an illness that it just seems callous or pig-headed for an outsider not to agree. William Stryon describes his experience of depression thus:

“When I was first aware that I had been laid low by the disease, I felt a need, among other things, to register a strong protest against the word "depression"...a true wimp of a word for such a major illness." (Darkness Visible: A Memoir of Madness)

If Stryon seeks any redescription it is toward a more severe, more pathologising language which would honour the experience of being taken over by something that seems quite alien.

Kay Redfield Jamison is very firmly of the view that her Bipolar Disorder is an illness:

“No amount of love can cure madness or unblacken one's dark moods. Love can help, it can make the pain more tolerable, but, always, one is beholden to medication that may or may not always work and may or may not be bearable” (An Unquiet Mind: A Memoir of Moods and Madness)

Elsewhere she acknowledges the unique mixed quality that mental health problems have:

"It is an illness that is biological in its origins, yet one that feels psychological in the experience of it"(An Unquiet Mind: A Memoir of Moods and Madness)

Some people may agree with Jamison and Stryon, others may wonder if they're even on the same planet. I bring them to the table because they seem to be at odds with the first hand experiences so readily appropriated by those who seek to combat the medical model. If, like Boyle, you regard "illness" as something with a clear and agreed definition, you will recruit the service user accounts that flatter your own, and possibly stop hearing those that don't. Given the continued ambiguity in the debate, this seems an unwise maneuvre. Before we make assertions about what is and is not an illness, we need to decide what we want the word to do for us. In the meantime, I consider myself lucky that it isn't my decision to make.

* This paragraph has been corrected, it used to say: "Theoretically I used to be convinced by the argument (made, for example, by Mary Boyle) that disease or illness is what we say about problems where there are not only symptoms (unpleasant experiences) but also signs (biological events which explain them). This argument is based on a definition sometimes attributed to Rudolph Virchow, who died over 100 years ago but it is arguably only relevant if you think that the criteria by which we decide can have been fixed back then for all eternity." Mary Boyle, to whose "Schizophrenia: A Scientific Delusion?" I was referring, does not define signs and symptoms this way.