625 W. Washington Ave • Madison, WI 53703-2637

Vol 1, Issue 4 March, 2004

Does recovery from a mental illness mean being free of illness? Is it the same as cure?

THE PROCESS OF RECOVERY
– Ron Diamond, MD, Medical Director, Mental Health Center of Dane County, Inc.
and Terri Pellitteri, OTR, Community Resource Manager

Recovery can mean different things to different people. It is influenced by our experience with mental illness, as well as our family, cultural heritage, education and training values, beliefs, etc.

Recovery, from our perspective, is the process of recapturing our own lives, of having more to life than illness or struggle. It’s a journey to regain our integrity of being. There are many different ways we can define ourselves. I may be a physician, a mother, a tennis player, an avid reader, and I may also be someone with schizophrenia. The process of recovery is ensuring that our illness or struggle is not the only way we view our selves or the only way the rest of the world views us. People often have residual parts of their illness and still go on to recapture their lives.

The process of recovery from a major mental illness, such as depression or schizophrenia, is similar in many ways to recovery from any other major life changing disease, illness or trauma. Immediately after a heart attack, a diagnosis of cancer, or a serious car accident, that illness/trauma becomes the focus of our entire life. We feel as though we ARE a heart attack walking down the street. We BECOME the cancer and have a difficult time seeing anything about our selves that is not cancer related. We EXPERIENCE the accident time and time again. In other words, we define our selves as the "illness or trauma."

Over a period of time, in the process of recovery, we reconnect with our selves apart from the illness or trauma. We become a person who had a heart attack, a person who still has to worry about our heart, but goes on about the process of living. We become a person who is a cancer survivor. One who may have gone through chemo, may have residual effects, and may clearly understand the return rate of cancer, but we are no longer consumed by our illness. We become a person with a trauma history. We may still have nightmares and flashbacks, but are also able to stay in the present and look forward to the future.

In the process of recovery, we get our lives back. The cancer, the heart attack, the trauma becomes a smaller and smaller part of how we think about our selves and we recover our capacity to focus on the things that are of value to us – family, friends, play, community, spirituality, artistic expression, work, etc.

Model of Recovery
Recovery can be thought of as requiring both internal and external conditions. External conditions are things that others (family, friends, mental health professionals, etc.) can do to foster recovery, such as: supporting our right to make choices about our own recovery process, maintaining a respectful, empathic, and encouraging attitude, striving to understand our values and beliefs, helping us to recognize our own individual strengths, and believing that each of us can have a life that is meaningful and fulfilling.

Internal conditions refer to what we, by our selves or with the support of others, can bring to the recovery process. Family, friends, mental health providers can support our internal conditions, but these conditions are under the ultimate control of what we bring to the recovery process. These include healing, the development of a sense of self apart from the illness; empowerment, the taking back more control over our life and life decisions; connection, the development of connections to the world in ways other than through illness, and finally, hope, perhaps the most important internal condition. (*Jacobson, et al. 2001)

Importance of Hope
We survive the bad or painful parts of our lives because we have hope that things will get better. Without hope we tend to give up. "The hope that creates recovery is both a belief that recovery is possible and a commitment to making it happen.” It supports us during periods of increased symptoms, struggles, and other difficult times. (*Jacobson, et al. 2001)

Hope has many components including change, acceptance, and letting go. Hope is often sustained by a series of small changes rather than a major life restructuring. At the center of hope is a shift in priorities; paying attention to strengths and what is going well in our lives, instead of what is not.

Hope is nourished by a sense of optimism that the world can and will get better. It may also be nourished by what is called “grace” or “spirituality.” People going through severe pain or serious illness of any sort often find themselves becoming more spiritual. As our external world has been knocked asunder we often search for greater meaning to life
(*Ref. – Jacobson, et al.; Psychiatric Services 52(4):482-5, 2001 Apr.).

RECOVERY IS…
Not The Same As Cure
Recovery is a process, a journey that allows a person to regain as much of their personhood and integrity as possible, despite their mental health struggles. This process is never complete nor is there an end point. People can be at the very beginning of this journey, just barely seeing themselves apart from their illness/struggle or well along the path, living with mild, moderate or complex and severe symptoms.

Highly Individualized and Culturally Influenced
Recovery is an intensely personal process. What I may need to enhance my recovery may be very different than another person and my needs may change over time. I may need a great deal of time to take the first step while another person may just plunge right in. I may choose to start by connecting with a neighbor or church group while another may start by returning to work. In addition, some of us may choose traditional western medicine to help us with our illness/trauma and perhaps combine this with education and other healing modalities. Others of us would look to the healing traditions of our ancestors or our spiritual beliefs which might offer a vastly different perspective of "illness" and "recovery." Recovery requires respect for individual and cultural difference.

Inherently Nonlinear
Change for all of us takes an up and down, often bumpy course. There is a fiction that states, "everyone gets a little better every day, in every way." But that’s fiction and not how people typically change. We are unable to predict what allows people to make a major gain in their life, or to predict when a hard won accomplishment may be temporarily lost. Change often takes time, and it is important for the individual (as well as the family member, provider, etc.) to remember this as a way of decreasing the frustration that can block the process of recovery.

Possible Even With The Presence Of Severe Psychiatric Symptoms
People can function, have friends, enjoy family, live independently, and get a job while having psychotic symptoms. People can also learn to cope with their illness or struggle. John Nash, as portrayed in “A Beautiful Mind," continued to have hallucinations & delusions, but was able to learn to disregard them, even though he could never stop them from occurring. Significant psychotic symptoms may be major impediments to recovery for some people, but surprisingly are not the major barrier for most.

Hindered By Stigma
Recovery from the stigma of mental illness is often more difficult than recovery from the illness. Stigma puts a ceiling on recovery. It harms all of us."Stigma leads others to avoid living, socializing or working with, renting to, or employing people with mental disorders, especially severe disorders such as schizophrenia. It reduces patients’ access to resources and opportunities (e.g., housing, jobs) and leads to low self-esteem, isolation, and hopelessness. It deters the public from seeking and wanting to pay for care. In its most overt and egregious form, stigma results in outright discrimination and abuse. More tragically, it deprives people of their dignity and interferes with their full participation in society." [1999 Mental Illness Report, U.S. Surgeon General Dr. Satcher]

About Compassion
Many of us, in the journey of recovery, are given opportunities to develop the art of compassion – towards our selves and others. And many of us experience a profound transformation in this process. Compassion is a highly effective healing tool in that it provides health benefits to both the giver and the receiver.

Children and the Recovery Process
Kids can have mental illness just like adults do. And like adults, mental illness can make the job of being a kid much more difficult. The job of children is to learn how to have friends, how to function in families and society, how to learn at school so they can be productive adults. Kids with mental illness can learn all of these things, but they will need our help in order to do so.

Childhood and adolescence are times of rapid change and development, and recovery is influenced by these developmental stages. As with adults, difference in family and culture mean that each child will go through recovery in his or her own unique way.

ACTIVE AND ONGOING
– Ed Erwin, Mental Health Aide Crisis Stabilization Program and UW-Madison Undergraduate Student

What I’ve learned, and what’s really different about me, is that I know how to be a Cub’s fan. For those of you who don’t know baseball, the Chicago Cubs are losers. They also have some of the most loyal and ardent fans in the sport. Cubs fans know they’re going to take the World Series eventually. But, for the time being, they take each game and its loss or victory as it stands… eager for the next game. They enjoy the opportunity to try, something most people lose after a while.

At age 16 I had a United States Chess Federation rating, and placed in the top quarter at the Midwest Invitational in Chicago. In my 20s, I was in college with hopes for a Ph.D When I first realized I had a paranoid delusion and was "one of the mentally ill" two things happened to me: (1) I was amazed something so bizarre and unimaginable had happened to someone who so consistently voted Democratic, and (2) I was deeply moved that there were people who spent their lives being there to catch me when I needed them.

The mental illness is something that happened to me. How, nobody’s really sure. But far too often, it’s the only thing about me that counts when I meet people. I’ve lost jobs, the attentions of otherwise good women, and a lot of respect I thought I’d earned, all by not being ashamed to say who I am.

I find the disease is harder on people who care about me than it is on me. They’re far more afraid of what will happen to me than I am. Amongst people I know, some feel guilty about the situation and are tremendously uncomfortable in dealing with me. These are the reactions I’ve learned to live with. A mind is a terrible thing to lose, and it greatly frightened me when I first dealt with it; I can’t expect a better response from anyone else.

Sure there are days when I feel so undervalued and poorly judged that I think to myself, “I didn’t think it was possible to be lower than a snake’s belly.” But I’ve learned that no matter how traumatic the experience, you still live the days and nights one by one. There are other problems to be dealt with and victories to enjoy.

ABOUT HOPE
I often work with people who have lost hope. The most important thing I can do is not just prescribe the right medications or make the right diagnosis, but hold hope in a crucible and blow the embers to keep it alive until that person is strong enough to take that crucible back and to hold the hope themselves. Instilling hope is not something I can fake. It has to be something that I feel in my soul. – Ron

Many of us, especially early in the recovery process, are fearful that the supportive people in our lives (family, friends, mental health professionals), "will give up on us." While we may not communicate this fear directly, we watch for signs of diminishing hope. As we progress we begin to recognize "we can make it," but this may still be linked to – "if you don't give up on me." At some point in the recovery process we begin to identify our own intrinsic strengths and hope becomes internalized. The gift of recovery is that we can, while still having our own struggle, cultivate our personal sense of hope, and "hold hope in a crucible" for someone else. – Terri

MYTHS ABOUT MENTAL ILLNESS
MYTH: People with a mental illness are unable to take care of themselves.
FACT: Most people with a mental illness live as our neighbors, working alongside us in our jobs. Most live in their own apartments and homes. We would not recognize most people with a mental illness any more than we would recognize someone with diabetes or heart disease. The reality is that people with a mental illness look and live just like the rest of us.

MYTH: Mental illnesses are caused by a personal weakness.
FACT: Many factors affect our brain and contribute to a mental illness, but personal weakness is not one of them. Factors that do contribute are: chemicals in the brain, genetics, emotional and psychological stress, and trauma.

MYTH: The biggest barrier to recovery is either mental health treatment that does not work, or people with mental illness who are unwilling to accept treatment.
FACT: Acknowledging that we need help can be difficult for all of us. However, stigma, limited resources, lack of insurance, myths, etc. are the leading barriers to recovery. Through the collaborative effort of mental health consumers, providers, and family members, we are getting the word out that mental health treatment is effective, and people can, and do, improve dramatically. .

MYTH: People with a mental illness are potentially violent and dangerous.
FACT: People with a mental illness are much more likely to be the victims of violence rather than the perpetrators. We tend to become frightened by people who act or look different from ourselves, and we become easily concerned that someone with a mental illness is dangerous if we perceive them to be acting "oddly." TV and the movies very often portray people with mental illness as dangerous, reinforcing our fear that everyone with mental illness is potentially violent. The reality is that people with mental illness are no more dangerous than anyone else in our community.