When the mental health system is not mentally healthy
Posted Nov 05 2012 2:19am
The previous posts all deal with the subject of coercion and the violation of human rights that for too many people is their experience of the mental health system. The post below says that violation is not an aberration of the system, but in some way built in, because of the message it tells people about themselves. I have worked in the mental health system and have also been a recepient of its services. I have met and know many, many people that I believe are honorable, dedicated people trying their best to help. The problem that I am talking about is something that defines at least in part the context within which they work and helps to make the efforts of even the most dedicated less impactful than they might be otherwise. It is the fundamental issue that makes the mental health system less than mentally healthy for many people. It is an issue that many people are struggling with and in many places you find real efforts to change the defacto way that the system defines the people it works with. It is that effort that is, I believe the real hope for change in the mental health system
This post and the 4 before it basically comprise a series that deals with many of the same ideas. As long as the mental health system defines the basic truth about us as what we are called instead of how we care, what we care about and how we are cared for it will always be shy of what it hopes to be.
from Feb 2010
In a fundamental way the mental health system fails to serve those in need. This failure has in some sense been responsible for the deaths of many people, the ruined health of many more, and the ruined lives of countless others. It has not been because of a lack of skill, commitment or effort of those who provide mental health services. It has not been because of some lack of motivation, insight or unwillingness to change on the part of those receiving services. It is not the result of financial challenges or lack of availible services although both of these have drastic effects. It is, instead, the result of the ordinary way the mental health system does everyday business.
The effects of untreated mental health issues are common knowledge. 30,000 people a year commit suicide. Probably 10 times that amount make an attempt. Unaddressed mental health issues have a role in virtually every form of human misery from drug addiction, lost jobs, family struggles, lost relationships, homelessness, and virtually every other problem you can think of. It destroys not only those with problems, but countless others they know, that they love, and who love them. It is an equal opportunity destroyer. It does not respect status, power, age, or any other variable.
Yet with all this being commonly known a curious fact remains. Depending on what study you read somewhere between 40-70% of the people who could possibly profit from some type of help from mental health services do not seek them. Many more enter the mental health system but leave without following through or buying into the explanations or services they recieve there. Why?
One obvious issue is that of accessibility of services. For some they neither have the financial resources they need to access services or else the services they need no longer exist. Ample evidence exists that this is a major issue.
Some lay the problem at the feet of those seeking help. They are “unmotivated.” “They dont really want to change….” Or in its most radical version- “They have brain damage and dont even realize they have a problem.” Some people are not motivated. Some people dont want to change. And some people show little insight. But none of that has anything to do with mental health issues. It has to do with being people. In virtually every area of human conduct the same criticisms can be made. In fact, many people believe the greatest problem in all medicine (not just mental health) is lack of patient compliance . In her book, “Join the Club”, Tina Rosenberg makes the following observations, ” Poor patient adherence is a serious problem; dozens of studies have shown this. Only a fourth of people on blood pressure drugs in one study took their medication properly. Only 13 percent of diabetes patients taking certain drugs complied with their regimens for a year….50% of patients with chronic illnesses dropped out of treatment within year….poor adherence is responsible for an increase in bacteria resistant to antibiotics, millions of hospitalizations, hundreds of billions of dollars in wasted health care and immeasurable patient suffering.” NO- blaming the victim- assuming that because people have mental health issues that they are incapable of seeing their need for help or that they have some strange need to hang on to the misery in their lives because of their issues is simply wrong. They are simply human and have the same difficulties as anybody else. They may be no better, but they are no worse.
In the last few years I have gotten to know hundreds, maybe thousands of people who have been identified either by themselves or professionals as having serious emotional health issues. They apply or have had a wide variety of labels attached to them: mentally ill, having a mental illness, consumer, patient, client, person receiving services, survivor and many others. Many have told me that the services they have received in the mental health system have been of immeasurable help. Others have told me he services they received were of little help or even made things worse. After talking and listening to many people, looking at my own experience and the experience of many I care about I have come to what I believe is an accurate conclusion.
Many people find the mental health system intolerable or even useless because of what they believe it says about the kind of people they are. The mental health system makes sense of mental health issues in such a way that it speaks predominantly about the “judgement of mental illness.” It tells them the most they can expect is a diminished life dealing with a life long affliction that will probably only get worse. It tells them they will be forever dependent on professional treatment and often that they will have to take medication for the rest of their life. The medication helps many, but for many others doesnt work nearly as well as advertised and in fact has side effects that are dangerous and drastically affect the quality of daily life. The disease concept is justified as a way to tell people it isnt their fault, but fault or not, leaves many feeling that their lot in life is to be forever left out of good things and marked as somehow deficient and not as really human as other people. If they accept this “judgement” for many it also means they are in danger of being treated with prejudice by those around them and perhaps excluded from relationships and groups they formally were part of. They also find that many of the people who try to help them are suspicious of their commitment to making a better life. They tend to believe that “mental patients” cant be trusted and really dont want to change. They talk about some people as “frequent flyers” and often dont believe the people they are trying to tell to change are likely in the end to do the things necessary to change.
Many of the people I know tell me that the mental health system uses a cookie cutter “one size fits all approach.” They object to being told the most fundamental thing about them is their diagnosis and that because of that diagnosis the things they value and care about are not quite as real or relevant as they are to people without a mental health diagnosis. They are astounded that their diagnosis is often more an artifact of the particular doctor they see than anything else. They see doctors who assure them that medications are necessary and safe, but yet read the constant reports of pharmaceutical companies who lie, cheat and manipulate to sell these “necessary and safe” medications. And they wonder who and what they can believe.
Many people decide they are not the kind of people the mental health sytem tells them they are and that their life need not be limited to the experience the mental health system provides. They opt out of the system or never enter. And when mental health issues are real, when they are life destroying or life altering that decision to opt out can be and is often catastrophic. Treatment can and does help, but when receiving it means accepting an identity and prospectus for life that is untenable and horrible many people choose not to accept the treatment. In the book by Tina Rosenberg quoted earlier she spends a lot of time talking about patients with diseases like AIDS who refuse to take the medicines that might keep them alive. She makes the same point. When getting treatment means accepting a “reality” you cant accept you often refuse treatment.
When I talk to the people who have been helped by the mental health system they tell me about another identity they have found. For them what is important is not the judgement or sentence of mental illness, but the promise of recovery. They have bought in, not to the terminal sentence of less life, but to the promise of more and better life. They identify less with professionals and more with others who have walked in the same shoes as them. The idea that those with lived experience can be of a help that professionals perhaps cant be is an idea that is growing in importance and acceptance. In many areas though it has yet to be integrated into a prime part of the experience of someone who seeks help in the mental health system. Rather it is because professionals are threatened by it, dont understand it, or because no one has really figured out how to make a service based on what is right with people rather than what is wrong something that financially pays I dont know. I suspect there is some truth in all of it.
The sentence of mental illness is too often a sentence to despair and diminished life. The medical model has a prime liability. Anything that tells people they are chronically ill and will probably be so for most of their life is not likely to find many people easily accepting its findings. For most people their problems with mental health issues are a matter of degree and frequently episodic. To be told life as you know may well be gone is not likely to find many takers. It just doesnt seem true.
The recovery model, the use of peer support, does talk about the possibility of hope. It give you a peer group to identify with that says that you can share the experiences and successes of others and they can share yours. It says you matter and can make a difference. It tells you life matters and is much more than anything that bothers you or troubles you.
The mental health system all too often tells those it serves that deprivation is all that awaits. It is not necessarily a message it intends to give. Many very dedicated and skilled people try very hard to say anything but that. But perhaps if the message of recovery and more life were to take center stage more people would believe them and avail themselves of the help they offer.
It seems so wrong that people should die of thirst in the presence of what may be the water they need.