The best of Hopeworks: Diagnostic labels and ruined words
Posted Aug 06 2012 3:40am
This blog has had many posts that talk about what it means to be labeled as “mentally ill.” Aside from what you believe about the accuracy of such labels, being diagnosed has real impacts on your life. It can change the terms with which you define yourself, the way that others define you, your social status and roles, the ways others treat you, the opportunities available to you in life and your sense of what is real, meaningful and possible. It entangles you in a system that is often inadequate and chaotic. It is a system that many find traumatizing rather than empowering. For too many their experience in the system is as problematic as the issues they deal with. The following is on the sidebar of this blog and summarizes much of what we believe:
You are not the things
You are called
No matter how frequently
you are called them,
Or who calls
Or why they call.
You are not the things
you are like
regardless of how much
you are like them.
You are not
the things that measure you,
that place you
or limit you.
You are not
what you have,
how you look,
or how you feel.
You may be many things,
But no thing is all you are.
You are a gift
in a world needing gifts,
in a world that often believes in neither.
You can care and be cared for,
Touch and be touched,
Laugh and cry,
Live and live for.
You can be alone or be with,
be brave or be scared.
Nothing is closed,
but nothing is free.
Close not your eyes
And reach to be all you can be.
Many people believe that “mental illness” is a ruined word. They believe that while the distress and pain people deal with is very real, the concept of “mental illness” to explain that distress is inaccurate, incomplete and actually harmful to the people it is applied to. They point out that life has become increasingly medicalized. Much pain and suffering that was once just considered part of ordinary experience has become a disease. Psychiatric diagnosis are not derived from any type of research but rather committee vote. As any one who has been served by the mental health system can tell you what you are labeled tends to be as much a function of the beliefs, experience, and training of the person assessing you as it is a description of what goes on with you.
Classificatory systems do not explain. They describe. Sometimes they do not describe very well, but they never explain. We have turned a description of people who experience life in a certain way into an explanation of why they experience life in that manner. In the 1920′s social psychologists explained everything by claiming that people did things because they had an instinct to do so. Eventually they realized that this was just circular thinking. It made no sense to say people acted in a certain way because they had an instinct to do so and believe that explained anything. Giving something a name and saying the name explained the thing it was attached to was a pseudo explanation. Diagnoses are the same. Describing a pattern of experience and then claiming the name you give explains the pattern is simply a foolish way to think.
This is from a previous post on this site called “The Diagnostic Fallacy…..” :
In regard to the DSM the biggest fallacy that I see is not the proposal for a better diagnostic system but the fallacy that any diagnostic system is going to make things better. There is a difference in believing that a diagnosis might tell you something useful about someone and believing that it can tell you something fundamentally true about him. In the first instance the diagnosis is a map about a portion of someone’s experience which like all maps serves to guide you and inform you about how to make decisions about what to do. In the second the diagnosis is not a map to the truth, but the truth itself. It leads you to the ultimately destructive conclusion that a person is what you have decided to call him. The results in every form of human endeavor throughout history have proved time after time the tragedy of this. The history of the mental health system in this country has been too much a history of ultimately cruel and mean things being done to “mentally ill” people that we convince ourselves are being done for their own good. The lived experience of countless people is that labels, rather they be “scientific” or not, carry with them a great deal of prejudice and discrimination. Any professional who believes the act of labeling, regardless of the scientific language they cloak it in, is a morally neutral act is out of touch with the world of the people he labels.”
I remember when someone first told me that the correct terminology was not that someone was mentally ill, but that they had a mental illness. This they said conveyed that the person was not the illness. But the reality is different. Regardless of how you play with the words the term mental illness carries with it a profound judgement about the person it is applied to. Quoting from an earlier post “The Fundamental Lie” :
“There is a fundamental lie that anyone who has mental health issues in their life must confront on almost an every day basis. This lie is told in many ways, both said and unsaid, and impacts in strong ways both those who have mental health issues and those that don’t. It affects how those with mental health issues define themselves and how others define them. It is real simple. In some way your issues, your “illness,” makes you less of a human being. You are not as “successful” as others, you don’t “measure up” and because of that you should not expect as much out of life and others should not expect as much out of you. You are “flawed” in significant ways that are likely to affect everything about your life.”
On the other hand I have one very good friend who told me that the term mental illness was inadequate because it was more than that. He described his experience as “an invasion.” He thought terms like “challenges” and “issues” were politically correct but weak terms to describe an awful reality. He told me his version of the issue one day. “How do you describe something that is so awful and so terrible that people sometime cope with it by killing themselves in a way that does not denigrate or cut down the people who have it. What term or word conveys both the awfulness of the human experience and the dignity and worth of the person who has that experience?”
In Tennessee the term used is consumer. I know a lot of people hate that. I have heard some people like the term survivor. It convey both the struggle with issues as well as the struggle with the system which for some people is as difficult. Another person told me his problem with that term is he thought the words “so far” should be added.
I dont know the answer. Part of me believes the problem is in believing that any label really matters. I do not define myself by what is difficult for me. I define myself by what is important to me. When I am really “depressed” one of the lies that depression tells me is not just that it is important, but ultimately the only important thing. It robs me of me. Much argument in mental health seeks to do the same thing. It tries to find a way I dont find too distasteful to define me by what is difficult for me or problematic in my life. And if I buy into that then I wonder if I have not committed a fundamental act of violence towards myself.
I like the way they do it at Celebrate Recovery. The define themselves by what is important to them. “My name is ____. I am a believer in Jesus Christ and I struggle with issues of __________.” Different things are important to different people, but most of the people I know with a diagnostic label feel like one of the worst things done to them is the theft of the possibility of the same things being important to them that are important to other people.
I remember reading the first rule of doctors is “do no harm.” Along those lines I believe the first duty we have towards ourselves, our neighbors, our family, anybody who struggles is to insure justice. The problem with labels is that when you define people with problems as sick, diseased or not quite as human as others it is a short path to deciding they need to be controlled for their own good and that it is just not possible for them to live life as well as other people. It aint so. And the system spends too much time saying it is.
What I think I would like is for people to know that no label expresses the truth about me. I am a person. Period. Sometimes a mess, sometimes very difficult, sometimes very blind….. but still a person. And understanding that is the beginning of understanding me. I can tell you that dealing with the challenges of being a person is much more difficult than dealing with the challenges of being a patient. But there is reward, and meaning and purpose to being a person and little of any of that to being a patient.
Labels are tools. They are not truths. And like all tools sometimes they dont work very well. Sometimes they dont fit the purposes for which we use them. But effective or not, useful or not they are only tools.
I want to conclude with a final quote from an earlier post, “Meaning matters” :
“I worked with a very smart psychiatrist once who told me that eventually science would understand everything about the brain and all difficulties could be dealt with by the appropriate medication. She told me that was the scientific outlook. In her view man was reducible to the forces operating within him: chemical, electricity etc. This very smart psychiatrist was wrong. Man is not reducible to the forces operating within him. What she believed was good science was not, and in fact, wasn’t even good philosphy
When applied to mental illness what she believed was simple. It was a matter of poor chemistry or poor electricity or some combination of the two. Again she was wrong about that.
Meaning matters. Humans are creatures that operate within some context of meaning and that meaning has great influence on how they operate. Anything that doesn’t take that into account or that sees it as a simple manifestation of an underlying biological reality misses out on describing what it means to be human….
I think we need to insure justice. It starts with I matter, you matter…. everyone matters and no label, term, name or diagnosis that implies otherwise should ever be tolerated, believed or nurtured