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Identity and Mental Illness: Constructing a Strong Recovery Narrative

By Kim Puchir, Communications Coordinator


"The redefinition of one's self as a person of whom mental illness is simply one part is probably the most overarching aspect of recovery," wrote Larry Davidson, professor of psychology in the psychiatry department at Yale and author of Living Outside Mental Illness: Qualitative Studies of Recovery in Schizophrenia. Recovery in all its aspects takes work, as anyone living with mental illness can attest. Medication is an important part of this work for many people—remembering to take pills is itself work—but working on oneself requires a subtler kind of effort.

A person's identity, or definition of one's self, exists on a level that—though it can be supported or encouraged by others—remains personal. What happens on the level of identity is essential to psychiatry, the rest of medicine and any discussion of improving the quality of life for people living with mental illness.

Illness and Identity

Survey: What's Your Identity?

NAMI is interested in having individuals who live with mental illness share their perspectives on self-identity. Please share this survey wtih others who have been diagnosed with a mental illness.

The survey closes Feb. 15. In next month's e-Advocate we will summarize the survey's results and discuss some practical methods for strengthening identity.

The study of identity formation has more often fallen to psychology than psychiatry, which has traditionally focused more on identity disorders. Recent studies about identity formation in recovery from serious mental illness show a trend in the other direction, however. According to the Encyclopedia of Psychology, "Components of identity include a sense of personal continuity and of uniqueness from other people." People living with serious mental illness often experience disruptions in this sense of self—like the title of a popular movie about mental illness, Girl Interrupted. The components that make up most people's identity—work, family and other levels of relationship to society—are strained by mental illness and a healthy sense of uniqueness sometimes becomes a feeling of isolation. Some of this isolation may come from the very way that the person thinks about his or her illness. People facing conditions from schizophrenia to cancer have been described as experiencing "engulfment" or an overwhelming of the self by the illness.

Arthur W. Frank, an influential writer about the way people conceive of themselves in relationship to an illness, wrote in his book The Wounded Storyteller: Body Illness and Ethics about common illness narratives such as restitution (the old self restored), quest (find meaning within illness experience) and chaos (no discernible sequence or progression). As clinical psychologist Roger D. Fallot points out in Spiritual and Religious Dimensions of Mental Illness Recovery Narratives, these paths are different than those usually traced by what he calls "recovery narratives," which "acknowledge both the reality of mental illness and its effects, yet develop a sense of meaning and direction that supports their moving beyond the limitations imposed by the illness and by societal responses to it." In other words, the person has some control over the story they create around their illness.

Recovery on the Level of Identity

A review of studies examining personal recovery stories have found that moving from "an illness-dominated sense of self to one that is defined as competent and agentic [empowered] is an important part of the recovery process." People in the NAMI community might say at this point, "My mental illness does not define who I am." Or, as Anthony D. Mancini, a clinical psychology who studies trauma and grief, wrote in his Self-determination Theory: a Framework for the Recovery Paradigm, identity formation means "mental illness is one facet of a more differentiated self."

If this work seems like the domain of philosophers, consider that there is nothing more concrete than the difference between someone who is being controlled by his or her illness versus someone who is learning to control that illness. The thing about identity is that it is unique—it tends to defy attempts to define it.

Strengthening Identity

Everyone is an expert in his or her own experience—this is the foundation for peer support. "It was this way for me" doesn't imply "it works this way for everyone," however. Reading about how others have navigated their own personal landscape may help to orient someone within their own illness experience. There is something of the philosopher in his process after all, according to Westerbeek and Mutsaers, who write that people living with depression, like those living with cancer, experience "a continuous uncertainty about their health, which forces both types of patients to find their own answers to existential questions about their lives, their selves and the meaning of illness."

Dave Carl
Meet Dave Carl: a social worker, advocate, author and athlete who happens to live with spina bifida.

Considering that many people living with mental illness have experienced trauma and negative messages, how do people living with serious mental illness maintain a healthy self-image? This is where mental health advocates can learn from people with "visible" disabilities. NAMI talked to Dave Carl, an advocate for persons with disabilities who lives with spina bifida, a congenital condition that has made him a lifelong wheelchair user and brought many health challenges along the way. He says his family always treated him as if he came first, and the wheelchair and condition came afterward. This gave him the strong sense of self necessary to withstand frequent teasing at school as well as learning disabilities and a serious seizure disorder that was triggered whenever he tried to concentrate. "After I graduated from college I couldn't read," he admits.

Soon after, he had brain surgery—one of his many surgeries—that resulted in successfully controlling his seizures. He now works as a social worker, public speaker on disability, active volunteer, blogger and, most recently, author. His children's book, Super Cyclist depicts the adventures of a superhero who uses a hand-cycle—a cycling method used by people in wheelchairs—to save the day. He admits that he has found his own "inner superhero" and that he taps into this image of himself when people are surprised at how "able" he, a person with a disability, is.

Dave doesn't see any such clear line between himself and the rest of the world. "My message is, everyone has issues; anyone can feel uncertain and isolated," he says. "But we're all more alike than you think." He himself has experienced an episode of major depression and recommends volunteering as a way to improve community involvement and self-esteem. "When people think I can't do things I have to prove them wrong," he says. "I want to get the word out and educate the public, who see the wheelchair first and often tell me ‘I don't know how you do what you do.'.…Once I start telling people that I can do basketball, football, hockey, skiing and swimming, they start to see ‘me.' They still see the wheelchair but they don't see it as much."

The Mental Health System and Beyond

Archimedes said, "Give me a place to stand and I can move the Earth." Identity is that place from which a person finds the strength to start again, to believe that they deserve to get better and take the first steps to this end. Mental health treatment approaches that include the patient's input tend to be more successful, while studies of people in nursing homes, or who are living with diabetes have also been shown to do better with treatment that encourages the patient's autonomy. In An Analysis of Psychiatric Survivor Oral Histories, participants emphasized the moment in their recovery when everything "clicked"—when they realized no one would find the road to recovery for them, but instead they would have to find it for themselves. Another study of people living with schizophrenia found that such "awakenings" were transitory. Instead, recovery was a gradual process in which medications were important but so was personal "work." In the best-case scenario, a person moves from the point of view that hospital is home, to the idea that it is a place to visit for a tune-up. A strong identity helps keep people connected to goals beyond the mental health system—moving from being a "good patient" to being a "good citizen."

Susan Sontag said that illnesses like AIDS and cancer, which long eluded scientific understanding, have often caused society to attribute the origin of these conditions to the people themselves—to their character or something they did to bring it on themselves. All too often this has happened to people living with "invisible" and complex conditions like many mental illnesses, Redefining oneself in relation to an illness is an important step towards wellness, particularly for people who have experienced the sting of stigma and the pressure of being collapsed into their condition. Let us know what steps you have taken to define who you truly are.