Writers and journalists have more freedom than therapists to write about patients, and they seem to be doing so more these days. This is a welcome development, as writers and journalists provide a spirit of creative self-reflection that differs from the all-too-common predictability that comes from evidence-based approaches to psychotherapy. Mental health professionals can benefit significantly from tuning into the voice of patients about their experience as patients.
In this newsletter, my focus here will be on a journalist and a writer who discuss their experiences as patients. I shall consider two new books, Strangers to Ourselves: Unsettled Minds and the Stories that Make Us, by Rachel Aviv, who is a New Yorker journalist (and whose case study of Naomi was discussed in the last newsletter Mentalizing Health, #35), and The Invisible Kingdom: Reimagining Chronic Illness, by Meghan O’Rourke, a devastatingly honest reflection about her illness and her collision with the medical establishment that turns unresponsive in confronting what exceeds the limits of its knowledge.[i] O’Rourke is a poet and memoirist.
Both Aviv and O’Rourke share a sensibility in valuing medical help at the same time as they are skeptical about and disappointed by how they have been treated. Both are the opposite of simplifiers (complexifiers?), and they leave us with lots of unresolved questions to contemplate. Both are ambivalent about the psychological aspects of their difficulties; both draw the line and err on the side of being selective and self-protective about what they reveal about their own psychological histories. They have every right to be cautious and to avoid too much self-revelation, which could threaten to diminish their work. It is not a criticism of either author that I found myself wanting to know more about them. I admire their circumspection, but it would be dishonest to conceal that I was left, ultimately, with some feelings of unsated curiosity.
There are important differences between Aviv and O’Rourke to acknowledge from the start. Aviv is reporting on her experience of being hospitalized for anorexia at the tender age of 6, which helped her overcome it, and enabled her to live a life unaffected by this history. O’Rourke is plagued over a long stretch of her adult life; she gets better but in a tenuous way and learns to cope with her suffering. While Aviv focuses attention on the mental health profession, O’Rourke considers a wider playing field, the medical profession, in both its conventional and alternative forms.
Aviv’s experience is, frankly, humbling for mental health professionals to fathom. After not eating for a few days, her pediatrician recommended hospitalization. At the hospital, she is restricted to a strict behavioral regime, where if she eats one meal, she can call her parents; if she eats two meals, they can visit. Aviv is 6 years old, away from her family, and exposed to older patients who lead her to adopt new anorexic preoccupations, like exercising vigorously and counting calories. Much later, Aviv returns and interviews the mental health professionals who knew her, and they suggest that she did not like the experience she had. Her indirect response, wondering if others liked their experience, is telling.
Here's the surprising thing: Aviv’s treatment works, and she is discharged after 6 weeks, immediately returning to school. Moreover, Aviv implies that she has been fortunate enough not to be troubled by anorexia as an adult. She is a bit cagey about whether she has experienced issues around eating post-hospitalization. She seems ambivalent about the hospitalization: on the one hand, it seems extreme to hospitalize a child who is so young and to provide such a serious diagnosis; on the other hand, there was some risk attached to her weight loss and refusal to eat, and the intervention did set her on a better path.
Aviv’s own story is juxtaposed to two young women whom she encountered in the hospital. One young woman, in particular, Hava, comes from a similar Jewish background, but has a strikingly different fate: she regarded anorexia as defining her, developed bulimia, had a baby that is adopted, became suicidal, met a nice young man who has issues himself, and ended up committing suicide just before they were to move in together. The title of Aviv’s book, Strangers to Ourselves, was taken from Hava’s journal and is a tribute to her memory. Aviv strongly identifies with Hava (some people thought they looked like siblings in the hospital, and Aviv wonders if Hava’s boyfriend notices the similarity when she interviews him after the death). Yet, Aviv also conveys that she was fortunate to have dodged a bullet, scarred by the hospital experience, perhaps, but not at defined by the diagnosis she received.
How can we make sense of Aviv’s experience? She provides some tantalizing bits of information, but she prefers to leave things ambiguous, stressing the point that the story that psychiatrists tell often fails to do justice to patients’ subjective experience. Aviv’s characterization of anorexia as “’a reading disorder,’ brought on by uncritical consumption of texts that present thinness as the feminine ideal” (p. 7) This is intriguing, but she has more of an investment in rejecting interpretations (psychoanalytic ones, for example) than in elaborating on how such a feminist reading might square with contemporary approaches to eating disorders.
Some personal history is revealed: before Aviv was hospitalized, her parents were undergoing a bitter divorce. She had to deal with her father having a new partner (who became her stepmother) and her mother having a partner that did not work out. Aviv’s mother saw her as exuberant and silly, ideal qualities in a 6year old, whereas her dad’s girlfriend felt that she was the saddest child she had ever met. Aviv apparently refused to eat sometimes when she was with her father; however, the refusal that landed her in the hospital was inspired by fasting from Yom Kippur. Avi emphasizes that although the mental health world might worry about food restriction, religious traditions have seen it in more favorable terms, even as a kind of moral righteousness. Aviv struggles with issues around control, and some of the symptoms that she reports have an OCD quality.
Aviv is disinclined to speculate about the impact of her parents’ divorce affected her in this context. She is dismissive in reading her mother’s journal in which she criticizes herself for being mean to her daughters. Aviv sees this as internalizing psychoanalytic parent-blaming. However, later in the book, she reports meeting Hava’s father who had become an expert on anorexia. He tells her about passages from Hava’s diary that mention Aviva, and he observes that the mothers of people with anorexia are often unfulfilled academically and intellectually and the fathers are highly skilled and demanding. Aviv considers this formulation as accurate about her parents but does not wonder how this might connect with what she learned about her mother. In any case, incorporating what we learn about Aviv’s parents does not necessarily entail parent-blaming; it fills in the picture over and beyond the diagnosis.
Labelling a 6year old as anorexic is worrisome, and it is certainly problematic without sensitivity about how this is communicated (and working with the parents—her father apparently disagreed with the diagnosis). Aviv describes the psychologist she had in positive terms, as “soft spoken and nurturing.” But was he helpful in terms of Aviv making sense of what she was going through? Unclear. Aviv is adamant that insight is not enough, citing an old source that celebrates insight. She seems unaware that the psychoanalytic tradition never imagined that insight did not also require “working through,” and that contemporary psychoanalysts accepts the need to link insight to action.[ii] Aviv’s complaints about mental healthcare are focused on psychiatry, and she does not say anything about subsequent treatment experience. Aviv is not motivated to imagine solutions, although she leaves us with much to contemplate.
O’Rourke’s tale of searching for help for her persistent bodily symptoms is equally concerning about the medical establishment. However, her search eventually leads her to distill a fruitful path to cope with her ongoing symptoms. First and foremost, O’Rourke believes that it is important for doctors to engage in a relationship with patients in which they listen and respond to what they are hearing. One way to characterize this is to treat the whole person, not the diagnosis. O’Rourke cites a conversation Susan Block, the pioneer of palliative medicine, who affirms that chronically ill patients should expect “an emotionally supportive relationship with their doctors,” adding that “If we can’t do that, we really are practicing only half of what medicine is and can be” (p. 71).
Avoiding the assessment of indeterminate symptoms as psychosomatic is crucial for O’Rourke. She astutely observes that “People whose illness has no name get little sympathy (p. 98). O’Rourke complains about doctors who throw in the towel and cites an extraordinary passage from Susan Sontag: “illnesses we don’t understand are frequently viewed as manifestations of inner states” (p. 6).[iii] O’Rourke repeatedly expresses the wish for doctors to be receptive to what she has to say about herself and to avoid psychologizing it, which ended up leaving her feeling misunderstood. The categories of illness in the West, according to O’Rourke, are threefold: physical from a single origin, psychosomatic, or a third variation, which combines both. O’Rourke sees her own illness as belonging to the elusive third category.
O’Rourke’s odyssey through both conventional and alternative medicine is painful to read. Her hopes are raised, dashed, and she rarely feels that she has a partner who is motivated to work collaboratively. O’Rourke avers that she “craved a more nuanced discourse of the mind and the body” (p. 163). She finds some satisfaction through exploring literature on how stress affects autoimmune disease, noting that in her own case stress was produced by her ambition. O’Rourke is also interested in epigenetics, the study of how gene expression occurs during one’s lifetime, thus contributing to autoimmune responses. Diagnosing and treating autoimmune diseases are especially challenging, as they can take a long time to determine and even longer to help patients move toward improvement.
O’Rourke introduces Arthur Frank’s work on chronic illness, which distinguishes amongst narratives of restitution, where patients believe in their own recovery (think of the language of being “cancer free”), narratives of chaos, where patients have no coherent tale about their experience, and narratives of quest, where patients embark on a search to transcend their sickness and their stories reflect both discerning meaning and acknowledging loss.[iv] O’Rourke probably is more comfortable with the latter, although in an existentialist, rather than heroic mode.
She cites Alphonse Daudet’s experience of living with syphilis: “It’s bearable and yet I cannot bear it, offering the rejoinder that “It is unbearable—and yet I bear it” (p. 261). It is hard not to hear in this the echo of the ending of Samuel Beckett The Unnamable: “You must go on. I can’t go on. I’ll go on.”[v] In other words, there is no affirmation unaccompanied by resignation. Integrity is at stake for O’Rourke in coping with her chronic illness.
Some practical measures are recommended by O’Rourke, like centers for autoimmune diseases, where doctors of different specialties would work together. However, she is not optimistic that the medical system will be reformed any time soon. As she so eloquently reflects:
The U.S. medical system not only failed to diagnose me; it stopped
my quest in its tracks. Instead of acknowledging what
was wrong with me, the medical system asked my body to
behave as the obedient container of a distinctive and previously
understood disease rather than as the site of a complex disease
it didn’t understand” (p. 269).
What she was hoping for, she notes, is for doctors who could witness and accept that they do not yet have an explanation to offer.
At several points in O’Rourke’s book, I wondered if she ever consulted a psychotherapist. There is a single reference to having seen “excellent therapists,” although she clarifies that she had received “counseling.” So, it is unclear whether O’Rourke has ever tried psychotherapy, where the emphasis would be more on listening closely (and witnessing), and less on advice-giving. My intention is not to reopen the rear door of claiming that, ultimately, O’Rourke’s problems were psychosomatic. It simply occurs to me that psychotherapy could provide some of what O’Rourke was seeking and did not find from medical doctors.
Aviv and O’Rourke have written moving books that force us to question business as usual in healthcare. Aviv’s encounter with the mental health system was effective but also costly in the sense that it is unclear whether she would ever be tempted to re-experience it. O’Rourke seems to have dipped into mental health, but either she chooses not to disclose any deeper involvement or she has avoided it. The two works dovetail about the value of recognizing the stories that patients tell us. In a remarkable coincidence, both Aviv (p. 235) and O’Rourke (p. 129) turn to Keat’s notion of “negative capability” to articulate their conviction that cultivating the ability to tolerate uncertainty is desirable, especially as a way to resist the posture of expertise that we easily adopt in healthcare professions.
Let us welcome patients who write about their experience with us; and let us especially encourage patients not to hold back in the way that they reveal themselves. Let us also demonstrate our ample respect for negative capability, which, in my opinion, has been translated with the construct of mentalization, knowing that we don’t know, a humble invitation from us to our patients.
[i] R. Aviv (2022). Strangers to Ourselves: Unsettled Minds and the Stories that Make Us. New York: Farrar Strauss and Giroux; M. O’Rourke (2022). The Invisible Kingdom: Reimagining Chronic Illness. New York: Riverhead.
[ii] P. Wachtel (1987). Action and Insight. New York: Guilford.
[iii] S. Sontag (2003). Illness as Metaphor and AIDS and its Metaphors. New York: Farrar Strauss and Giroux.
[iv] A. Frank (2013). The Wounded Storyteller: Body, Ethics and Storytelling. 2nd edition. Chicago: Chicago.
[v] S. Beckett (2009). Three Novels: Molloy, Molloy Dies, and The Unnamable. New York: Grove.