Hence right now I feel rather torn, because although I feel that Coward's view is rather too trusting of authority and for some reason considers patients' own forays into finding out about their conditions to be a bad thing, I feel equally that Deleuze and Guattari are not really facing the patient but kind of detached and rather too playful about the condition, and also rather keen on building their own reputations and stati along with probably a lot of power and money. I don't think Coward recognises the inordinate trust she has implicitly placed in health care professionals and the subordinate position in which she has put patients, and I wonder how much experience she has had of being either.
Studying health as a detached bystander is very different from doing so with personal investment in health conditions. Some research into health is strongly motivated in this way and can be self-taught. One example of this is Michaela and Augusto Odone, whose son Lorenzo suffered from the progressively degenerative neurological condition of adrenoleukodystrophy, which has a typical prognosis of being fatal from about two years after symptoms become noticeable. Despite having no medical background of their own, the parents developed an oil based on canola and olive oils which slows the degeneration of the insulating myelin sheaths around the neurones. Their son survived to the age of thirty and Augusto received an honorary doctorate from the University of Stirling for his work. The consensus is that it substantially increases the time before symptoms develop if the patient has been established to have the inherited trait causing the accumulation of long-chain fatty acids in the first place. However, it's also possible that the parents experienced confirmation bias in the form of assessing Lorenzo's symptoms as milder than an uninvolved medical professional would have done. Again the question arises of where the authority should be placed.
Another example of an involved patient, which is probably the tip of the iceberg, is the case of an academic expert in bipolar disorder who was herself diagnosed as bipolar. Unfortunately I can't recall the name here, but it's easy to see that when an individual is "up", they are likely to devote a lot of energy and drive to a particular project which may of course rapidly founder without their help and turn out not to be as productive as they have perceived it to be themselves. The reverse would happen when someone was "down". They might fail to recognise the merits of their work or be able to do it at all. Perhaps the two states balance out. Nonetheless, this person, and I really wish I could present her to you as more than a vague memory, was most successful in her research.
The rest of the iceberg is something I've experienced and been involved with, and since my initial academic education was not specifically medical, I'm aware only of this motivation among clinical psychologists. These people have often embarked on a degree in psychology in order to understand their own unusual behaviour or mental conditions, and I would include myself in that as I was partly myself motivated to study the subject by my gender dysphoria, a subject for another blog. I presume that this motivation also exists among medics to some extent.
Many Complementary and Alternative Medicine (CAM) practitioners themselves suffered from disordered health which they feel what I'm going to call orthodox medicine failed to help them with adequately. On the other hand, a little knowledge can be hazardous and many orthodox medics might feel that this is all they have, hence the problem with inaccurately mapping a landscape mentioned above. Moreover, this mapping often risks only including the immediate neighbourhood and fails to see a bigger picture. There are clear principles which become apparent on observing or studying a variety of conditions and their pathology, that processes such as feedback and moving away from homeostasis are very important to illness. Much disease is literally tragic. A minor flaw in the body's way of dealing with an issue early on can trigger a fatal avalanche. And the thing about tragedies is that they should make the audience feel sad and perhaps achieve a form of closure on things in their own lives. The former makes sense in a medical context, although excessive involvement probably helps nobody. The latter can also be useful, and is probably the source of this very blog post, but there's a moral question in using people's conditions to deal with your own issues, and probably also a mental health one.
I'm aware that I've talked about conditions here rather than the people diagnosed with them, which suggests I've got my priorities wrong. Although it's possible and popular to look at health in terms of disorders which people have, this is not only a negative view of health which can lose sight of well-being as the unmarked state, but also abstracts the conditions from the people whom they constitute a problem. Rather than being seen as having disorders, people could be regarded as having "disordered X". For instance, whereas it may make sense to see someone as having an eating disorder, and in fact links it to a larger world in which eating disorders exist as abstract objects which can be studied and addressed, it also makes sense to talk about people as having "disordered eating". Likewise, to take an arbitrary physically-constructed example, many people with respiratory disorders are also people with disordered respiration. This shifts the focus from the disease to the patient, and naturally there's a further possible shift away from the patient into their living circumstances and the social and political factors which give rise to them.
This last shift does exist in CAM in the form of clinical ecology, which assesses health in relation to pollutants. Clinical ecology has been criticised for extending the scope of the concept of allergy too far, including sensitivities and intolerance, and so can be seen as controversial. Similar extensions are seen elsewhere, for example in certain forms of chiropractic which attributes what some would think was far too many disorders to subluxations which may not in any case be demonstrable. Herbalism itself started to go in this direction a century or so ago, where all herbal remedies were analysed in terms of their influence on the autonomic nervous system, but this phase is now regarded as an irrelevant and embarrassing blind alley. Nonetheless there is a risk of reductivism in CAM which seems quite common and I suspect is motivated by economic forces, or possibly by overvalued ideas which "explain everything". Then again, the question arises of whether the same can be said of orthodox medicine, and that is a question.
CAM is not the only field which can be criticised for untestability. The same might apply to another field which deals with mental health, namely counselling psychology and psychoanalysis. Whereas the second of these is not so much in vogue as it once was, the former is generally seen as a viable and valid approach, and there is little criticism of psychotherapy, although it does exist. Consequently, one is given to wonder why CAM is such an object of "skepticism" and psychotherapy and counselling aren't.
As I said, these are just a few fairly unformed, nebulous thoughts and I've set them down so people can take advantage of them. I apologise for them not being better-formed or systematic.