Reclaiming Narrative Identity and Recovery in Psychiatry

Jecker and Ko (2017) rightfully argue that the acknowledgment of narrative identity is crucial in care for patients after neurosurgical interventions, and that it is vital for patients that their inner narratives continue after these interventions. Yet as Jecker and Ko describe exceptional cases, such as temporal lobectomy or deep brain stimulation for Parkinson's, their article could give the impression that the relevance of narrative identity is limited to a very small group of patients. We argue that the significance of narrative identity is not limited to psychosurgery cases, as it implies a perspective on health and health care that is relevant to many other neurological and psychiatric disorders and their treatment. Central to this perspective is that the focus of treatment and care should not be on taking away the biomedical causes of illness, and curing the patient, but rather on integrating the illness in one's life story and finding a way to continue one's life. We argue that this is in line with the current concept of recovery in psychiatry, which emphasizes the development of new meaning and purpose in one's life, with support of professional and informal caregivers. We also argue that, thus understood, a narrative approach also takes into account the social context in which individual stories are developed.

The underlying concept of disorder in Jecker and Ko's account is not a biomedical one, in which symptoms and an underlying pathological substrate need to be removed in order to restore health, but a holistic one, in which a person needs support because she lacks capacity to achieve important goals in life (Nordenfelt, 2007; Zachar and Kendler 2007; Meynen 2016). However incapacitating and disruptive illness may be—as the cases of Walter, Steve, and Dubiel clearly show—symptoms should be regarded as part of oneself in terms of one's self-understanding, self-experience, or, in terms of narrative theory, one's “self-told story.” A narrative approach to personal identity implies that illness is intrinsically part of the person's life history, and should be acknowledged as such.

This could even mean that a medical success in terms of curation might alleviate a health problem in a biomedical sense, but can lead to yet another crisis: an identity crisis. The “burden of normality,” to which Jecker and Ko refer, illustrates this point: Life-altering medical interventions that remove persistent symptoms may simultaneously cause a rupture in the patient's autobiography, requiring the patient to reconceptualize his identity, having now become “normal” or “healthy,” rather than “ill.” Also in the case of severe side effects following a neurological intervention, an identity crisis can occur; after temporal lobotomy to treat medically uncontrolled epilepsy, Walter is no longer in control of his life story, being subjected to compulsions that he and those around him perceive as alien to who he is.

We argue, in line with Jecker and Ko's account, that taking the importance of narrative identity seriously in health care implies that treatment should extend to supporting patients in finding a way to continue their lives, of which symptoms are part anyway, either as past experiences that have been diminished by treatment (leading to a change in one's identity) or as persistent elements (not effectively altered by treatment, implying also a change in identity, for instance, regarding the loss of hope for cure). Treatment and care should therefore focus on integrating change (or lack of change) of symptoms, as well as side effects, into one's autobiography. Interventions that facilitate patients reconstructing their identity through narrative practices, as put forward by Jecker and Ko, not only contribute to their well-being, but can be regarded as core elements of treatment and good care. Such interventions aim at fostering patient competence in the sense of being able to find a balance between various values and enact them in the patient's life (Widdershoven et al. 2017a).

This perspective is in line with the current emphasis on recovery or rehabilitation in psychiatry, which focuses on regaining a balance in life after a psychiatric crisis and fostering empowerment. It challenges a biomedical approach, which focuses on cure and a return to symptom-free normality by removing a biopathological substrate and its accompanying symptoms. Rather, it emphasizes restoring the person's identity and enabling the person to lead a meaningful life and to participate in society. Recovery in this sense implies personal development, including a change in values and goals. It can be defined as “a deeply personal, unique process of changing one's attitudes, values, feelings, goals, skills, and/or roles,” and as “a way of living a satisfying, hopeful, and contributing life even within the limitations caused by illness” (Anthony 1993). Rather than the professional setting clinical goals, patients have to move beyond the role of passive care-receivers, and regain control over their life. Implementing recovery-oriented care should therefore be person-centered, focusing on subjective experience, and supporting individuals to live a meaningful life (Slade et al. 2014). This requires active involvement of family (Widdershoven, Voskes, and Meynen 2017b) and peers (Mead and MacNeil 2006).

The recovery model is especially relevant in the case of chronic illness, not only in psychiatry, but in health care in general. Since chronic illness has become widespread in present-day society, as many diseases that used to be fatal are no longer life-threatening, many people have to live with (serious) symptoms and impairments, which require another approach than one focusing on cure. This requires “narrative repair”; that is, creating and recreating a story as a unified whole that relates new experiences to each other and embeds them in the larger context of one's life can help people to reclaim their lives (Lindemann Nelson 2001; Palmer 2007)—not by “reverting back to normal,” but by regaining a meaningful life in terms of taking responsibility, carrying out worthwhile activities, building relationships, and being part of society.

Jecker and Ko mention the importance of paying attention to patients' narratives for “maintaining a patient-centered focus that enhances medical decision making over the whole course of a patient's disease trajectory." This also fits in with the recovery model, which emphasizes that individuals dealing with mental health challenges should participate in decision-making processes within a health care program: People should be “recognized as having a point of view worthy of being listened to [which] may in itself foster a therapeutic recovery by the client of her self-respect. In this way, the inter-subjective and self-determining potential of the client, at even the earliest stages of her recovery, is recognized and encouraged” (Fardella 2008, 122).

Finally, the recovery model in psychiatry acknowledges that the experience of social exclusion, or of being regarded as “dysfunctional” within society, is not only the consequence of a person's illness or of the side effects of treatment. Rather, it also relates to society itself. Therefore, the recovery model also critically focuses on the role of society and the social context of patients: What external factors obstruct recovery in terms of reclaiming one's (social) identity and developing a meaningful (social) life? Prejudices, perceptions, and exclusion mechanisms, which stress the importance of becoming “independent” of support and services, and becoming “fit to contribute” to society, should be addressed. Narrative repair may require a change in the narrative structures of society as a whole. This can be fostered by developing “counternarratives” (Hildeman Nelson 2001; Bamberg and Andrews 2004) that challenge dominant views, focusing on the need to be independent and to be economically useful, and show the reality of human interdependence and the relevance of mutual engagement and care as core elements of the social fabric of life.

As human beings are relational beings, a narrative account such as one's self-told life story is never isolated, but interwoven with those of others. An elaboration on this aspect might be a worthwhile addition to Jecker and Ko's narrative account of identity, and to their plea to find ways to support patients in reclaiming their narrative identity. This could be beneficial to the many people in our society who experience symptoms of psychiatric and neurological illness or the side effects of treatments of such illnesses. ▪