Narrative Medicine: A Communication Therapy for the Communication Disorder of Psychogenic Non-Epileptic Seizures (PNES)

Robert B. Slocum

Narrative Medicine Program Coordinator, University of Kentucky HealthCare, Lexington, Kentucky, USA

Psychogenic Non-Epileptic Seizures (PNES), also known as functional seizures (FS), can be understood as a communication disorder in which distress is expressed somatically in a pathological way instead of an adaptive and verbal manner¹. A seizure-like event may provide distraction or escape from an overwhelming situation or experience, but this escape comes at a severe cost to the patient². Patients with PNES are frequently misdiagnosed, and accurate diagnosis may be delayed for many years. PNES may cause severe disruption of the patient’s quality of life in terms of employment or schooling as well as relationships and activities of daily living. Untreated or ineffectively treated PNES can inflict enormous personal and financial burden on the patient. Patients with PNES may feel isolated and misunderstood. They may experience a loss of freedom and dignity because of PNES.

Narrative Medicine (NM) is a communication therapy that engages the patient’s life story and overwhelming experiences through interactive conversations and writing exercises. NM seeks to help patients identify meaning and identity in the context of their lives and challenges. NM provides space for the patient to explore thoughts and feelings in a guided conversation with a collaborator who listens attentively. The “teller” and “listener” share a “dyadic” professional relationship that encourages trust and respect³. Both teller and listener can be changed by an NM session⁴. Patients can reflect on their stories of illness and treatment relative to their sense of identity, sources of strength, new insights, and hope for the future. The NM facilitator may raise questions or offer thoughts for reflection that help the patient to make connections or consider new perspectives for understanding themselves and their situation.

Unlike Cognitive Behavior Therapy (CBT), NM sessions are unscripted and may take dynamic and unexpected turns depending on the patient’s issues and needs. NM focuses on drawing out and integrating the patient’s story for wellness instead of confronting and correcting the patient’s unhelpful patterns of thought and behavior. NM focuses on the patient’s narrative instead of the patient’s pathology.

NM sessions draw out the patient’s narrative of illness or injury and treatment in the context of the patient’s whole life story. NM helps patients work through the “biographical disruption” of their condition that threatens the “maintenance of a coherent self”⁵. The focus is to discover topics and areas in the patient’s narrative that the patient needs to explore. Improved communication with the patient can also strengthen the patient’s trust and therapeutic alliance with the medical team concerning ongoing treatment and goals of care.

NM sessions can help patients communicate more effectively concerning the unspeakable distress of their traumas and overwhelming experiences. They can discover how to speak about the unspeakable in their lives, and experience improvement as they face and work through their dilemmas and causes of distress. It helps to be heard. Finding words for difficult experiences and sharing the story can help patients to process their thoughts and feelings to reintegrate their traumas and other experiences in the context of their own sense of meaning, self-identity, beliefs, and goals. Difficult personal history cannot be changed, but the patient may come to see their challenges in a new light. The past cannot be altered, but it also does not have to be carried like a dead weight in the patient’s life. Patients can begin a process of communication and self-reflection about traumatic subjects that continues beyond the NM sessions. Follow-up narrative medicine sessions may also prove beneficial. The timing and pace for narrative work will vary with the patient and situation.

One published case study documented successful NM treatment of a patient with PNES and a history of childhood sexual abuse. Her episodes and trips to the Emergency Department became less frequent as she acknowledged the continuing impact of her abuse history on her life, shared important details of her story, and recognized the relationship of past traumas to triggering events in the present⁶.

NM can also be helpful for patients who do not have PNES or other functional disorders. For example, one published case study documented successful NM treatment of a heart patient with post-traumatic stress disorder (PTSD), sleep disturbance, and self-isolation after a traumatic experience with restraints while recovering from anesthesia following heart surgery. NM helped another heart patient articulate his goals of care and strong motivation to accept the risk of surgery to regain activity and quality of life⁷. NM helped a patient with brain cancer who experienced behavior changes after diagnosis and during the course of treatment. The patient and his wife reported he was less “filtered” after his surgery. NM provided a context for the patient and his wife to discuss his changes, encouraging their sharing and enhancing quality of life under difficult circumstances⁸. Additional research is needed concerning the effectiveness of NM in different clinical contexts.

NM sessions can help patients to overcome family or personal barriers and taboos about communication on difficult topics. NM can encourage patients to become more open to help and less inclined to hold their pain inside or isolate themselves. Patients discover new perspectives and insights to reframe their understanding of traumatic events. They can renegotiate self-identity with new hope, leading to improved resilience and quality of life. NM sessions encourage patients to communicate more effectively about their unspeakable traumas to reclaim their lives from the communication disorder of PNES and other functional disorders.

References

1. Jung Y, Chen DK, Bullock KD, et al. Training in treatment of psychogenic nonepileptic seizures. Chapter 33. In: LaFrance Jr WC, Schachter SC, editors. Gates and Rowan’s Nonepileptic Seizures. 4th Cambridge: Cambridge University Press; 2018. p. 344-57; LaFrance Jr WC. Psychogenic nonepileptic seizures. Curr Opin Neurol. 2008; 21: 195-201.
2. Reuber M, Rawlings G, Schachter SC. In: Reuber M, Rawlings G, Schachter SC, editors. Our words: Personal accounts of living with non-epileptic seizures. New York: Oxford University Press; 2018. xv-xviii.
3. Charon R, Marcus ER, et al. A narrative transformation of health and healthcare. In: Charon R, DasGupta S, Hermann N, Irvine C, Marcus ER, Colón ER, editors. The Principles and Practice of Narrative Medicine. Oxford: Oxford University Press. 2017. p. 271-91.
4. Charon R. At the membranes of care: stories in Narrative Medicine. Acad Med. 2012; 87: 342-7.
5. Lossignol D. Narrative ethics in the field of oncology. Curr Opin Oncol. 2014; 26: 385-8.
6. Slocum RB. Breaking the spell: Narrative Medicine applications for Psychogenic Nonepileptic Seizures (PNES). Seizure: European Journal of Epilepsy. 2021; 86: 96-101.
7. Slocum RB, Hart AL, Guglin ME. Narrative medicine applications for patient identity and quality of life in ventricular assist device (VAD) patients. Heart & Lung. 2019; 48: 18-21.
8. Slocum RB, Villano JL. Narrative medicine applications for neuro-oncology patient identity and quality of life. J Clin Neurosci. 2021; 83: 8-12.