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What is this thing called recovery

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What is this thing called recovery

    Appalachian Consulting Group, Inc. - 2009

    What is this thing called recovery?

    A look at Five Stages in the Recovery Process ?

    By Ike Powell: Director of Training ACG

Part 1: The Shift to recovery

I want to talk about two shifts that have taken place

    First, we will look at the shift from stabilization and maintenance to self-help and recovery; and then, the shift from self-help and recovery to system transformation.

This shift is held in the following image.

     1980 2003

    Belief: People cannot People can System needs to

     recover recover support recovery

Task: Stabilize and Introduce recovery Systematize

     Maintain programs recovery

Up until around 1980, the beliefs that dominated the mental health system were…

    (1) …people diagnosed with a severe mental illness would not recover, and more than likely the illness would get progressively worse;

    (2) …the most you could expect in terms of treatment was to get people stabilized and then maintain them as best you could in „supervised‟ environments in which they would not be able to harm themselves or others and would not be causing too many problems; and

    (3) …this stabilization and maintenance usually involved high doses of medication, long stays in secure institutions and/or years in „day treatment programs‟ designed to entertain with TV, table games, recreation, trips, outings and other „low stress‟ activities.

    It is important that we understand the mindset and beliefs of what I call “the old system”, because these beliefs can still be found in many agencies and organizations today. They are a major force working against recovery.

    Around 1980 this began to change. At this time, there was a shift from stabilization and maintenance to what was called „self-help and recovery.‟ Four things played key roles in enabling this change.

    First, consumers like Judi Chamberlain, Patricia Deegan and others began to write and talk about their own lives. Consumers were saying to providers in a variety of ways that “our lived experience with

    mental illness does not agree with your learned experience about mental illness. We are capable of

    moving on with our lives often in spite of the system.”

    Second, researchers like Dr. Courtney Harding were designing and implementing longitudinal research projects that were challenging some of the old myths about schizophrenia. Their research showed that

    people who have been very disabled by a severe mental illness could live a meaningful and productive life in the community when given the right skills, resources and supports.

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    Appalachian Consulting Group, Inc. - 2009

    Third, the philosophy of psychosocial rehabilitation began to emerge. This philosophy was based on the belief that people diagnosed with a mental illness can live in the community when given the opportunity to develop skills, resources and supports in relation to working, living, learning and socializing.

    Fourth, there was an improvement in medications which better controlled symptoms and had less harsh side effects.

    By the early 1990‟s, the concept of recovery had gained a foothold in many programs across the country. Dr. William Anthony, Boston University Center for Psychiatric Services, calls the 90‟s the

    „Decade of Recovery‟. Individual consumers and staff were beginning to believe in the possibility of recovery, but as they began to creatively bring the concept of recovery into a variety of environments and program settings, they continued to run up against the constraints of the system. The system was not ready to embrace concepts like „strength-based‟, „client-driven‟, „staff-client partnerships‟ as the

    major focus of treatment. It was as if they were trying to put „new wines into old wineskins.‟

In 2003, there was another shift. I am going to use the President’s New Freedom Commission

    Report on Mental Health to symbolize the shift that took place early in this century.

    While the 2003 report promotes the concept of recovery in its vision statement, it goes on to state that the mental health system is in disarray and needs to be transformed. It adds that the major focus of the current mental health system is not recovery. The system, according to this report, is currently oriented to the meet the requirements of the bureaucracy (system) and NOT the consumer. It focuses mainly on increasing the consumer‟s ability to „manage symptoms‟ and NOT on „managing life‟s challenges‟. The report goes on to state that if recovery is to take hold, staff alone cannot do the job.

    The system itself will have to become more supportive of recovery.

    We cannot begin to develop a recovery-oriented system or a recovery culture if we cannot agree on both the possibility and process of recovery.

    Knowing that recovery is a unique journey, are there common experiences within that unique journey? Appalachian Consulting Group thinks that there are at least five common experiences. We call these five common experiences „Five Stages in the Recovery Process.‟ But, before we get into the stages,

    let‟s look at what we mean by the word „recovery.‟

Part 2: What is meant by the word recovery in relation to mental health?

The Oxford Mini Dictionary defines recover as “to regain possession or use or control of…”

Keep that definition in mind as we proceed.

Recovery from mental illness has often been linked to words like regain, restore, rebuild, etc.

The following is an example of this kind of definition.

Recovery is a process of restoring a meaningful sense of belonging to one’s community and a

    positive sense of identity apart from one’s condition (italics added) while rebuilding a life despite

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    Appalachian Consulting Group, Inc. - 2009 or within the limitations imposed by that condition.” (Davidson, et al „Creating a Recovery

    Oriented System of Behavioral Health Care: Moving from Concept to Reality, 2005)

Dr. William Anthony states “Recovery is not the absence of symptoms, but the development of new

    (italics added) meaning and purpose as one grows beyond the catastrophic effects of mental illness.”

These statements seem to assume that at one time a person had a life a life with hopes, dreams, roles,

    responsibilities, and expectations. This life was lived in the larger community. It was expanding and future oriented. A person‟s self-image and self-story was pretty much intact. He was aware of his

    abilities, his potential for growth and had some sense of where he wanted to go and how he was going to get there.

    Then something happened. That life was interrupted by the onset of what we call a „mental illness.‟ Hopes, dreams, roles, responsibilities and expectations in the larger community were shattered. On the other side of that catastrophic shattering, life in the larger community was often lost and replaced by „life in the mental health system.‟ One‟s hopes, dreams, roles, responsibilities and expectations were

    reduced to the small, restrictive world of the mental health system.

    Recovery, then, becomes the process of moving as much of one‟s life as possible back into the larger community. It involves re-building one‟s self-image and self-story in relation to one‟s ability and

    one‟s potential for growth. It involves recreating roles and responsibilities in the larger community. It involves reframing one‟s hopes and dreams so that they are not just about illness and life in the mental

    health system, but about wellness and life in the larger community.

    Why do many people find this to be so difficult? What works against this happening? We will come back to these questions later. For now, let‟s continue to explore how we are using the word „recover‟

    in the peer specialist training.

    The traditional use of the word „recover‟ in mental health implies that something needs to be restored, regained or recovered. It assumes that 1) the person has been separated from the larger community in which most people live and function; 2) the person has been separated from his hopes, dreams, roles, responsibilities and expectations as a member of that larger community; 3) the person‟s identity has been reduced to seeing himself as his illness and its disabilities; and 4) the person does not have a life outside of his illness, the treatment he is receiving for this illness and the activities he is involved in within the mental health system.

The President‟s New Freedom Commission states, “We envision a time when everyone diagnosed with

    a mental illness will recover - or be able to recover, regain, or rebuild a life in the larger community. (Italics added.)

    All of this said, there are people who have been diagnosed with a mental illness who have not experienced this as a catastrophic shattering of their world hopes and dreams. They have not 1) been isolated from society in general and placed within a mental health system; 2) come to see themselves as the illness and its disabilities; (3 confined their hopes, dreams, roles, responsibilities and expectations to a life within the mental health system; and 4) restricted their lives to activities in the mental health system. Therefore, they do not need to „recover‟ a life in the larger community in the traditional sense. If this is true, how does the traditional way of looking at recovery relate to them? I am not sure that it does. For them their mental illness has not been a major interruption in their lives.

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    Appalachian Consulting Group, Inc. - 2009 Yet for many, if not most people currently receiving services from the public mental health system, this has been a „catastrophic‟ event. They have experienced the kind of interruption, separation and

    disconnect implied in the traditional definition. This being true, it seems that we could say that this definition does not directly apply to „recovery‟ from mental illness in general, but to recovery from the way that a person diagnosed with mental illness has been or is being treated by both the system and society.

Maybe a more appropriate vision could be held in the statement

    “We envision a time when everyone diagnosed with a mental illness will not experience that diagnosis as a catastrophic event in his life that

    1) isolates him from the larger society by placing him in a mental health system, 2) causes him to see himself as the illness and its disabilities;

    3) reduces his hopes, dreams, roles, responsibilities and expectations to those of a mental patient; and 4) creates a belief that he does not have a life outside of his activities within the mental health system.

Rather than approaching mental illness as a condition that either must be cured or for which there is no

    hope, mental illness needs to be seen as a long-term illness or condition that a person can learn how to manage and live with over time; and in doing so will require less intensive, less frequent, less costly and less time consuming interventions. The role of the mental health service system then becomes helping the person “identify and build upon his assets, strengths, and areas of health and competence to support him in managing his condition while (re) gaining a meaningful, constructive sense of membership in the community.” (Davidson, et al)

    People need to have immediate access to services and supports that they need at any given time, while being encouraged to find as many supports as possible in the larger community outside of the mental health system. From the onset, the focus needs to be on “What would you like to be doing that you are

    currently unable to do, or are having difficulty doing?” and “How are the symptoms of the illness working against you doing that?” From the onset, the focus is not limited to treating the illness (with

    the often implied message that life is somehow over), but also includes helping a person stay focused on what she would like to do with her life. This gives motivation to deal with the symptoms that are making it difficult, if not impossible, for her to do that. The focus no longer is limited to “What is it

    going to take for you to be able to manage your illness?” but to “What is it going to take for you to

    live more independently in the community?” When you change that question, you change everything,

    because you change the focus from how are you going to deal with your weakness to how you are going to use your strengths.

    When we talk about system transformation is it helpful to talk about a recovery-oriented system? Is this not building the new system on the assumption that the onset of mental illness means that a person will lose something if not everything - and the system needs to be oriented to helping him get that „something‟- or „everything‟ restored?

    Or, do we build the new system on the assumption that a person diagnosed with a mental illness can learn to manage his illness early on while continuing to create the kind of life he wants without ever having to be isolated from the larger community for an extended period of time, without ever seeing himself as the illness and its disabilities; without ever reducing or giving up his hopes and dreams; and without ever having to create a life for himself within the reduced framework of the „mental illness‟ community?

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    Appalachian Consulting Group, Inc. - 2009 The task today is to transform the system. What that transformed system needs to look like, or what the basic beliefs that will form the foundation of that system are, is another discussion. This will require creating a new vision of how mental illness is perceived and how mental health services are delivered. But until that happens, we will continue to have many people whose lives have been catastrophically shattered by the onset of a „mental illness‟ and the way the system and society has related to them.

    We need to find ways to continue the discussion on system transformation. We need to find ways to involve people at all levels of the system in that discussion. But, while having that discussion, we need to stay focused on the plight of thousands that have been disabled, isolated and demoralized by the old system.

    The system itself needs to get clarity and consensus on what the potential, the possibility and the process of recovery looks like for the person who has been isolated from the larger community and placed within a mental health system; the person whose hopes, dreams, roles, responsibilities and expectations are limited by his life as a member of the mental health system; the person who has come to see himself as the illness and its disabilities; and the person who does not have a life outside of his activities within the mental health system.

    The training for peer specialists does not focus on system transformation. That does not mean that peers being hired in the system as service providers will not have a transforming affect on the system. It simply means that is not a major focus. The major focus is on the individual recovery process or the recovery journey of the person who has had his life impacted by both the mental illness and the beliefs of the old system and society about mental illness. In coming to some agreement about the potential, the possibility and the process of recovery for this person, I believe that we will move our discussion about system transformation to a deeper level.

    It is in light of this that I think the concept of “Five Stages in the Recovery Process” provides a helpful framework for dialogue.

Part 3: A Definition of Recovery and Hope

In order to set the stage for presenting the „Five Stages in the Recovery Process‟ let us first talk about

    how the word „recovery‟ is used in the peer specialist training. Most would agree that there is no commonly accepted definition of recovery. So the question is what do I, as the major designer of the peer specialist training curriculum, mean by „recovery‟ when I am talking about the recovery process?

    My favorite definition is an adaptation of a definition that comes from a brochure written by the Mid-Hudson Forensic Psychiatric Center in Middletown, NY.

Recovery is the process of gaining control over one’s life – and the direction that one wants that life

    to go on the other side of a psychiatric diagnosis and all of the losses usually associated with that diagnosis.

There are four things I like about that definition. First, it mentions „gaining control over…‟ as opposed

    to being controlled by… Second, it focuses on „the direction that one wants one‟s life to go.‟ Setting a goal, or getting in touch with what one wants one‟s life to be like, is the heart of the recovery process. Third, it talks about the „losses usually associated with a psychiatric diagnosis.‟ There is nothing a

    person can lose that can‟t be loss as the result of a psychiatric diagnosis. The mental health system

    does not do a good job in helping people work through or grieve their losses. Fourth, it does not

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    Appalachian Consulting Group, Inc. - 2009 equate recovery with the absence of symptoms or with „cure.‟ It is not that symptoms are not important. They are, and they can be very disabling. But, recovery for most people means the symptoms are under control enough that they are not preventing the person from working to create the life that she wants.

    When we think about recovery, we almost immediately think of the concept of hope. Hope is often seen as the foundation or cornerstone of the recovery process. The following definition comes from the same brochure.

    Hope is the belief that one has both the ability and the opportunity to participate in the recovery process.

    Hope is not „I hope it doesn‟t rain today.‟ I have no involvement in whether or not it rains today. Hope is not „the light at the end of the tunnel.‟ Hope is a belief. It is the belief that there is light at the end of the tunnel even when I do not see that light. To hold the hope for another is to believe in that person‟s ability when she is unable to believe in her own ability.

    The staff of Appalachian Consulting Group has been working to articulate major aspects of the recovery journey or recovery process. We have been working to create a common understanding in order to develop a training curriculum in which all of the training sessions speak to and support that process in a constructive manner. We are not interested in debating the cause of what is called „mental illness‟ – genetics, trauma, fate, etc. but in the impact a mental illness and/or a diagnosis has

    on an individual and the beliefs individuals create about themselves in the midst of, and on the other side, of that experience.

Knowing that recovery is a unique journey, our basic question was “Are there common experiences

    within that unique journey?” We think there are at least five common experiences.

Part 4: Five Stages in the Recovery Process?

    We have developed what we call “Five Stages in the Recovery Process?” to speak about those common experiences. We call these experiences „stages.‟ While there is a lot of „grey‟ in the stages,

    each stage does seem to have its own unique characteristics. Because Patricia Deegan‟s work has

    been very helpful, I have included a copy of her paper that we use in the peer specialist training in the Appendix. In that paper, she speaks of five phases shock and denial, despair, hope and courage, the

    will to act and responsible action. We use the term „stages‟ instead of „phases‟ and have renamed them Impact of Illness, Life is Limited, Change is Possible, Commitment to Change and Actions for

    Change.

In order to understand the concept of „Five Stages in the Recovery Process?,‟ one first needs to

    understand what works against a person with a mental illness moving on with her life? Or, what it is about a mental illness that makes it difficult for people to function in the traditional roles and responsibilities of society? This takes us back to our earlier question “Why is it difficult to re-create a

    life in the larger community when a person‟s hopes, dreams, roles, responsibilities, and expectations

    have been reduced to a life within the mental health system?

What is the disabling power of a mental illness? (See illustration below.)

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    Appalachian Consulting Group, Inc. - 2009

    The symptoms of the illness can be very disabling. It is very difficult to function when one is in a psychotic state and not in touch with reality or when one is delusional, depressed or manic. The side effects of many medications can also be disabling. It is difficult to function when one cannot concentrate, when one feels drugged, when one has extreme weight gain, when one is sexually dysfunctional, etc.

    While people who do not have a diagnosis will almost always mention the symptoms as the most disabling aspect of a mental illness, this is not the first thing mentioned most often by people who have lived with a mental illness for years. If you ask people with a psychiatric diagnosis what is disabling or disempowering about the diagnosis, they will almost always talk about stigma first. The way others see you, relate to you, talk about you, what they expect from you or do not expect from you is often

    listed as the most disempowering or disabling aspect of that illness.

    Another interesting discovery is that if you ask people diagnosed with a mental illness to make two lists one list of what the symptoms of the illness keep them from doing and a second list of what their fears, low self-esteem and negative self-talk keep them from doing - the second list is almost always longer. Many people are often more disabled by what they believe about themselves because they have a mental illness than by the illness itself.

    So, in the training when we talk about the disabling power of a mental illness, you need to remember that we are talking about the symptoms and the side effects of medications, the impact of stigma and the impact of both symptoms and stigma on one‟s self-image and most often it is an inter-play of all

    three.

Let‟s go back to the concept of Five Stages in the Recovery Process?. They are not really five

    „stages.‟ What we are talking about is…

“Five ways that people with a mental illness relate to the disabling power of that illness at various

    times in their lives.”

But that is not a very catchy phrase.

It is not so easy to remember, so we went back to calling them “Five Stages in the Recovery Process?”.

    But, in order to hold the insight that there are really “Five ways that people with a mental illness relate

    to the disabling power of that illness at various times in their lives” we use the phrase…

“There are times when a person…”

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    Appalachian Consulting Group, Inc. - 2009 There are times when a person is relating to the disabling power of a mental illness in a particular way. I want to give you a quick overview of those stages, and then we will take time to go into depth with each stage.

Impact of the Illness There are times when the person is overwhelmed by the disabling power of the

    illness. She is struggling with the symptoms of the illness, the behavior brought on by the symptoms and the ramifications of this behavior and finds it difficult to function.

Life is Limited There are times when the person has given in to the disabling power of the illness.

    He has bought into all of the negative beliefs about „being mentally ill‟ and all of the negative implications regarding its disabling power. In giving in, he has lost all hope for a better life.

Change is Possible There are times when the person is questioning the disabling power of the illness.

    She senses that she may be able to do more than she has believed she could.

Commitment to Change There are times when the person is challenging the disabling power of the

    illness. He decides to move out of his comfort zone and begins to make small changes.

Actions for Change There are times when the person is moving beyond the disabling power of the

    illness. She begins to see the direction that she wants her life to go and starts taking major steps to move in that direction, often finding a life outside of the mental health system.

    At various times in the recovery process, there seem to be some key pivotal points where a person can go one way or the other. One way is moving on with what one wants one‟s life to be. The other is getting stuck, or sidetracked, and not having the life that one wants. These are times when internal and external pressures often come together to sidetrack or block the journey. In order to understand these crucial points, or dangers, one needs to understand what is going on with the person. Where is this person in the recovery journey?

We will look at the dangers as we look at the stages in more depth. Now, let‟s go back and try to get a

    feel for what is happening at each stage. I don‟t want you to think of these stages as „steps‟ - 1, 2, 3, 4,

    and 5. For some, there is a sense of movement from one stage to another. For others, they may experience all of these stages in various ways in a single day. For others, they may jump over, back and forth, etc. Remember, that they are really the way a person is relating to the disabling power of a mental illness at various times in his or her life. It is possible to be in different stages in different parts of your life. It may be my relationships are in the “life is limited” stage while my employment is in the “actions for change” stage.

    Remember that the stages are really ways that people with a mental illness are relating to the disabling power of that illness at various times in their lives”. In order to hold this insight, we use the phrase…

…there are times when…

There are times when a person…

     …is overwhelmed by the disabling power of the illness. Usually, at this stage, she is

    overwhelmed by the symptoms of the illness, the behavior brought on by the symptoms and the impact that both of these are having on her life. The illness is the central focus of her life, and the impact of the illness is the dominant experience in her life. She may be so depressed that she cannot get out of bed. She may be so manic that she is not in control. She may have behaved in such a way that she

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    Appalachian Consulting Group, Inc. - 2009 has cut herself off from many of her former significant supportive relationships. Or, the symptoms and behavior may be under control, but she is so overmedicated that she cannot function. People may be overwhelmed by stigma or how their identity is being redefined or by what has happened to their self-image. But, what I am talking about here is being so overwhelmed that one cannot function the way society expects people to function. Usually, when people are so overwhelmed that they cannot function effectively, the symptoms and related behavior are not under control or the person is over-medicated.

    While most people will talk about being overwhelmed by the catastrophic impact of the onset of the illness, the experience is not the same for everyone. Some people may never remember not being „sick.‟ They may never remember „having a life.‟ Or, getting a diagnosis may have come to them as

    good news. “There is something wrong with me that has a name. Other people have experienced what I am experiencing. I am not alone. Thank God there is treatment for what I have been going through.” Therefore, all of the five stages as described in the training may not speak to everyone.

    But many, if not most, people experience the onset of symptoms, the resulting behavior and the loss often incurred as a „catastrophic shattering of their world, hopes and dreams‟ to use Patricia Deegan‟s words. People use a variety of words to describe this time in their lives confusion, shame, loss,

    shattered, denial, bizarre, not in control, looking for answers. As consumers have talked about this time, there are a number of common themes. Some experience this as a time of „living two lives.‟ At work they are „functioning‟ or „going through the steps of living‟ but experience no joy, meaning or

    fulfillment. No life outside of work. They go home and crash. They spend a lot of time alone, in bed. They have no energy. They know that something is wrong, but will not, or are not able to, seek help. They try to hide what is going on from others. For some this „living two lives‟ goes on for years.

    For others, their life becomes chaotic, and they often talk about feeling that they are not in control. They don‟t understand what is happening and often turn to drugs and alcohol for some relief. They

    experience a lot of loss. They burn a lot of bridges. There is a lot of denial that anything is wrong. Some talk about feeling that they had gone some place from which they couldn‟t come back. This is

    often a time of confusion, anger, fear, and unusual or unhelpful behavior. People‟s behavior gets them in trouble with the law and results in a lot of loss and rejection. With so much going on, they are often overwhelmed to the point that they cannot function in the way that society expects a person to function.

    Remember, Patricia Deegan talks about this experience as a “shattering of one‟s world, hopes and dreams.” A visual image for this stage is a precious vase being shattered. If you think of the vase as a person‟s life, that person is left with two questions - Will I ever be able to put my life back together again? And, if I am, will it be worth anything?

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    Appalachian Consulting Group, Inc. - 2009 While the stages are not steps, there do seem to be dangers at each stage that often work against the person moving on or cause the person to become „stuck‟ in a particular stage or get sidetracked on

    the journey. There seem to be some key pivotal points where a person can go one way or the other. One way is moving on with what one wants one‟s life to be. The other is getting stuck or sidetracked

    and not having the life that one wants. I call these pivotal points „dangers.‟ At each of these stages,

    there is a question that a person must answer. Internally, there are pressures to answer the question in a negative way. Externally, there are pressures to answer the question in a negative way. When the internal and external pressures come together in a supportive way, it often causes the person to get stuck or sidetracked on the journey.

The danger at this stage is held in what I call the Question of Identity. How am I going to define who

    I am and what I can do on the other side of this experience? The danger is that the person begins to

    redefine herself in mental illness terminology which automatically limits her sense of future possibilities causing her to give up or reduce her hopes, dreams and expectations.

    Because of the person‟s inability to function as society expects a person to function and because of all of the losses and disruption that often is a part of the onset of a mental illness, or of a major relapse, there is much going on that would cause a person to redefine herself in this way. There may be shame and embarrassment for not being who that person and others thought she should be. There may be a sense of hopelessness in that she will never be able to be who she and others though she could be.

    Externally, the system and other people may get caught up in reinforcing these feelings. ”I understand that you want to go back to college. But, you know this will be a lot of stress. Stress is not good for a person with a mental illness. It often causes them to become symptomatic and relapse and have to be hospitalized. Then there is the stigma. What if people find out you have a mental illness? That can cause stress, also. Etc., etc.

    Let me share with you a story that illustrates this. A 17-year, junior in high school was having difficulties. His family, thinking it was typical teenage problems, took him to a family counselor. After a few sessions, the counselor said that she sensed there was more going on than she was qualified to deal with and suggested the parents take the youth to see a psychiatrist. After meeting with the youth, the psychiatrist said, “You have all the signs of major depression.”

What was the next thing you think she said to this 17-year-old high school junior? She said, “A lot of

    people are diagnosed with depression and go on to lead a very meaningful and productive life. I don‟t want you to think that this will in any way keep you from doing whatever you want to do.” Then the

    youth said, “I have always wanted to go to college…” The psychiatrist interrupted him and said, “You are not hearing what I said. A lot of people are diagnosed with depression…” and she went on to

    repeat what she had earlier said. It is like she was saying, “You still are - and can continue to be the

    person you have been. I am not going to let you create a new identity around your diagnosis.” She was not going to let him live out of an “I am disabled” story. She was determined to help him keep his

    old identity of a 17-year-old with dreams and aspirations.

    Because of the power of a doctor‟s diagnosis, the danger of redefining oneself is often very strong in the early stages of diagnosis and treatment, but it is not limited to this time. A person may have been doing well for years, and for some reason crisis in this life, medication stops working, etc. she

    begins to struggle deeply with her identity. “I thought I had this licked. What‟s going on? Am I ever going to be able to get stable and stay stable?” The danger is always there, especially when the actual

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