A friend once told me in a moment of cynicism that the first law of the mental health system is that mental health is whatever the people who decide to pay the bills pay for.
If that is to any degree so then I have an idea for the second law:
It is important what you pay for.
In the end, more often than not, you get what you pay for.
Essentially medical insurance pays for the cure or management of a disease. If you cant cure the disease then you offer the best alternatives to manage the symptoms. The focus is on the part of the person malfunctioning. Heart doctors work on hearts. Lung doctors work on lungs. Feet doctors work on feet. The assumption is fix the broken part, cure it, or at least control the symptoms and life will be better. I dont know if it is ever that simple,
My wife has epilepsy and has been taking anticonvulsants for her entire life. Seizures have caused incredible pain and disruption in her life. But so has medication and she has had times where it is not at all clear what one is the worse. At least with the seizures she knows what she is fighting. With the medications she finds herself fighting problems she never bargained for that have affected life in ways she could never imagine.
With “mental illness” the whole approach breaks down. The psychiatrist becomes the doctor who deals with the brain. As time has proven “curing the brain” does not necessarily have a lot to do with caring for the person. People are more than biological. The are social, historical, spiritual, cognitive, and intellectual beings. Anything that reduces us the level of the neurotransmitters in our brain reduces us to something we are not.
Pharmaceutical companies found a “cure,” a group of medications that seemed to change the way people felt, thought, and acted that in some respect was a positive change. (Never mind for now that the “change” was seldom what they described it to be.) Psychiatrists were people with a disease and no cure. When the people searching for a disease found the people searching for a cure a match was made. The brain doctors were in business.
Medications managed symptoms and if symptom management was the measure of success then “side-effects” became collateral damage that diverted attention from what was important. When they became too hard to ignore (maybe not “on the side” anymore) they were denied, minimized, rationalized and finally justified as a risk you had to take if you were serious about getting well. Anosognosia became the scientific term for the people who were blind to their illness as evidenced by their failure to consistently take their medication. There was no scientific term for the people who were so tortured by the side effects of their meds that they decided that it simply wasnt worth it.
Diagnosis properly understood is, I believe, a comparison, a metaphor. It is saying “this is like that.” It is taking a list of characteristics and saying they are like another set of characteristics. Sometimes the comparison is helpful and guides you in helpful ways. Sometimes the comparison is not helpful. The idea is for diagnosis to be a tool to understanding, to be a useful map that takes you in directions that allow you to make choices that enable life to be better.
Diagnosis in the psychiatric sense has become, not a comparison, but a sentence. It is not “you are like this,” but instead “you are this.” And the result has been the stigmatization of everyone being “helped.” Diagnosis has become the assignment of personal insufficiency.
We have gotten what we pay for and as long as we continue to pay for it we will continue to get it. Efforts like Robert Whitaker’s Foundation for Excellence in Mental Health Care and the independent efforts of many, many countless other people are efforts to say we need to pay for something else. The recovery model says that caring for people is what is important and anything that is not a tool to help people find a better life is not worthwhile.
It matters what we pay for. We pay for a system now that legitimizes side effects as basically the cost of doing business. It is a system in which things that dont always seem to work very well make a lot of money. People dont change things easily or willingly that make a lot of money. The things that make money also give them that do them status and more than a little sense of turf worth protecting. People are justifying animals and a body of beliefs, ideas, and “facts” spring up proving the value, the truth and the necessity of the things you have a vested interest in.
Another friend wrote me, “When the use of psychotropic medication is the basic building block of the system and pharmaceutical companies have an interest in selling them to everyone, when insurance companies legitimize them as the standard of appropriate treatment (pills cost less than people) and psychiatrists find themselves prospering as pill dispensers change is an uphill struggle…”
It is an uphill battle. But one being fought in many ways by many people in countless arenas. I hope that an honest system is possible– one that is simply based on one question. What helps? I hope it is an open table where all who have something to offer are welcomed. And I hope it is a table where the final word is that of the people seeking help. In the end it matters what I choose…what you choose….what others choose. And if that doesnt matter then the cynics are right. Nothing really does matter.