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Second look: On the experience of mental illness

Posted Sep 13 2010 1:04pm

There is a strange and puzzling fact that I have been told by several people:  Treatment  can help about 80% of the people who need help.  Only 40% of the people who need help seek treatment.  I can only see 3 possible reasons for this:

  1. Treatment is not availible.  The person recognizes their need and wants help, but because of lack of resources or lack of availible services is unable to access help.
  2. Treatment is availible, but the person is in denial about the nature of their problems or their need for treatment.
  3. Treatment is availible and the person accepts their need for help, but for whatever reason just doesnt believe that treatment will work.

The first reason  is obviously important, but for purposes of this post I want to look at reasons 2 and 3.

To some degree reason 2 obviously has some truth in it.  With the stigma about mental illness and the way it is portrayed in the popular culture there are people who refuse to even consider the idea that they might have mental health issues. People who are involved in treatment are told in many ways and at many times that this is some indication of a basic deficit in them and that they are somehow a diminished person.

But this argument is used in another way that is not true.  There are people who see the inability to see their problems as a condition of mental illness.  They say mentally ill people are incapable of insight into their condition and because of this should, in some circumstances, be forced to accept treatment against their will.  This is basically the position of the Treatment Advocacy Center.

Leaving out the dubious proof of such an assertion I have another issue with this idea.  Most of the people I know who are not involved in treatment do not fall into this category.  The majority of people I know accept their mental health issues.  They do have insight and frequently a remarkable amount of it, but simply do not believe that treatment works and if anything makes their life harder.

And this brings me to the major point of this post.   The mental health system in major ways lacks credibility with many of the people it seeks to serve.  Many of these people would be glad to accept help if they thought it was really helpful.  The reason I think is that mental health providers while they may possess varying degrees of knowledge about mental illness and treatment, are across the board remarkably naive about the experience of mental illness within the culture it occurs in. 

The consequence of being labeled mentally ill has substantial consequences that affect the course of everyday life of those labeled.  In many ways these consequences are as substantial as the effects of the illness.  As I said in an earlier post, ” 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.”

There are real dangers for many people if they let others know what is going on with them.  I know many people who have lost jobs or who are afraid of losing jobs.  I know people who fear what the label will mean to their reputation or status.  I know people who have lost relationships and many other opportunities.  For many people the label of mental illness, apart from the illness  itself threatens their chances to have the kind of life they would like to have.  It is extremely threatening and leaves them with a life where the specter of danger is always close by.

One friend told me, “My therapist is a very smart man, but he thinks it is all a manner of doing the right thing and trying hard enough….He has never walked in anything like my shoes.  He tells me how to swim, but never seems to realize that I have a 100 pound weight on my back.”  Another friend said, “I just get told the same trite and irrelevant things I have been told  a thousand times.  They don’t know how hard my life is.  They tell me how to have a better life, but I still cant make it through the day without disaster.”

Many people experience the mental health system as a “culture of disregard.”  It is complex and confusing.  There are a million rules, both written and unwritten.  There are many services, but most of these services operate independently of each other and lack unity of purpose and direction. 

One person had what I thought was a particulary good point.  He said, “You know I see a counselor once every two weeks for about an hour. He makes sure I am taking my meds and talks to me about “managing my disease.”  But there is something missing.  While I am “managing my disease” what am I supposed to do about the mess it has already made in my life?”

This issue of credibility and confidence is already recognized to some degree by the growing emphasis on the recovery model and peer based services.  Unfortunately in rough economic times in many areas these are the first services cut.

Peer services express a basic truth.  Much of treatment is focused on teaching you knowledge or getting you the right medication and that is indeed essential and important.  But there is another even more foundational truth.  As life is not about what you do to yourself, neither is recovery.  Recovery is what you do with other people and much of the treatment system, simply doesnt connect people well with other people they can count on.  Medication and technique come first, and while they are important they are not everything.

This post has covered a lot of ground, but I hope the central point is clear.  Many of the people who need help the most simply dont think it works or is very helpful.  And without that  problem being addressed the mental health system will never live up to its real promise

(a repost of an earlier post on Hopeworks Community)

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