by Kathryn Andrews, a member of Desert Palm UCC’s W.I.S.E. Committee and Southwest Conference COM A. This is a book review for Disability Pride Month.
Psychiatrists have no definitive explanation for why some of their patients rebound from mental illness while others have an illness “career.” In Strangers to Ourselves: Unsettled Minds and the Stories that Make Us, Rachel Aviv looks beyond neurology and family dynamics. Instead, she asks whether diagnosis and story framing have a role to play in outcomes. Professionals convey a story on an individual level by naming, diagnosing, and providing a prognosis to the patient or the patient’s family. On a macro level, society conveys its own stories about mental health through cultural attitudes or societal stigma.
The author cites herself as an example of the power of framing and story. At age six, Aviv became the youngest known patient with anorexia nervosa, a disorder characterized by extreme calorie restriction. She spent six weeks in a hospital receiving counseling and food. Doctors conveyed the risks of her condition and prognosis to her parents, but did not share details with Aviv herself. It was not until she reached middle school — when friends began experimenting with anorexia — that Aviv began to understand the meaning of the diagnosis. Aviv attributes her emergence from anorexia in part to her ignorance of the societal ideal of thinness. More importantly, at age six Aviv never received the language describing anorexia and never incorporated it into her understanding of herself.
Aviv broadens the narrative to include stories of several others in the “psychic hinterlands” and the impact of environment and ethnic and cultural narratives on their lives. For example, she introduces us to Bapu, a woman from Kerala, India. Western psychiatrists diagnose Bapu with schizophrenia, and her upper-class family abandons her. Upon relocating to another town, Bapu begins to live on the streets. The people she meets there revere her as a saint and request her prayers. Interestingly, a World Health Organization study conducted over three decades found people more likely to “recover” from schizophrenia in developing nations than in developed ones, with some of the best outcomes in India.
In the United States, social norms also have a role to play in outcomes, including the likelihood of self-harm. Based upon 100-year averages, the suicide rate among African Americans is roughly half that of Caucasian Americans. Although the suicide rate for African Americans has risen in recent years, sociologist Kevin Early explains that the black community views suicide as “almost a complete denial of black identity and culture” as it is at odds with enduring.
The author acknowledges that a diagnosis can bring relief to a patient and family bewildered by symptoms’ onset. Aviv writes, by “creating a shared language, contemporary psychiatry can alleviate people’s loneliness, but we may take for granted the impact of its explanations, which are not neutral: they alter the kinds of stories about the self” and “how we understand our potential.” These stories “bear heavily on a person’s sense of self” and desire for treatment. In gathering patients’ stories, Aviv is struck by how easily her life might have taken another direction.
While I do not doubt the effect of story Aviv outlines, limiting information to an adult patient seems paternalistic. Perhaps the diagnosing professional should equip the patient with the diagnosis and treatment options while deferring any prediction about the future. Pat Deegan, a psychologist and schizophrenia patient, agrees that some phases of “recovery” entail the patient’s participation in “planning and work” but rejects the notion that every aspect “can be consciously orchestrated.” Hope remains the wild card, a phenomenon for which psychiatry, psychology, social work, and science cannot account. According to Deegan: “But those of us who have recovered know that this grace is real.”