Learning Compassion for the People Behind the Diagnoses

Earlier this year, surrounded by family in Syria, my great-aunt Widad passed away at the age of 100. Widad had schizophrenia, making her the oldest person with schizophrenia I had the pleasure of knowing. While she may have not been fully aware of it, Widad changed lives. The lessons I learned from my interactions with her continue to help me care for people with severe persistent mental illness (SPMI). This essay is a tribute to how she can help physicians who care for the SPMI populations. 

I believe the most important lesson Widad helped me learn is the common humanity that remains applicable in SPMI populations. Widad’s name in Arabic is derived from the word Wudd – meaning warmth, affection, and kindness. Widad was a kind and loving soul. She had a loving upbringing and worked as a school administrator/substitute teacher prior to her first psychotic break. My last memory of Widad was her making a joke about a news headline while we were watching TV. While the family pitied her, perceived the joke as an example of ideas of reference, she smiled as she said it and we both laughed. I realized how important acknowledging common humanity is in establishing therapeutic rapport with SPMI populations.

I have often found that asking a patient curious questions about their interests is well received (i.e., What are your hobbies? Do you have any pets? What is your favorite TV show?). Noting these responses and using them to converse with patients helps them see that I view them as a human and not a diagnosis. I had a patient who genuinely laughed and appreciated when I asked about her cat, “Sassy.” This rapport helped her keep her appointments. It is important for providers to be able to identify moments of genuine warmth that can come from this difficult patient population and use those moments to establish safe connections with their patients.

I have to acknowledge the heroic efforts taken by family members to care for Widad through her illness. Widad was never admitted to an inpatient psychiatric facility. She always lived with one of her siblings – eventually passing away while living with my grandmother, who is 102 years old herself. It was unfortunate that she had to spend that last years of her life living in a country torn by a violent war, but her family did their best to provide her with the most stable environment possible during those turbulent times.

Part of providing a stable environment for patients with SPMI populations is having an appropriate liaison between all their providers: psychiatrists, family physicians, and community services. Widad was lucky to have a nephew, a physician, who was able to coordinate all of these providers for her. As I work with my SPMI patients, Widad reminds me how important it is to keep communication open with my patients’ primary care providers. I recall a recent patient who was receiving long-acting injectable antipsychotics from his PCP, as our clinic did not have the ancillary staff to provide these injectables, but his PCP’s office did. The patient's psychiatric symptoms appeared to worsen with this medication, and because of efficient communication initiated by the patient's PCP, we were able to provide early intervention which likely prevented a hospitalization.

Working with patients with mental illness, especially the SPMI populations, can elicit many emotions in their providers. I have observed throughout my training many health care workers' attitudes and emotions of anxiety, fear, and at times, disgust toward individuals with severe mental illnesses. This can lead to patients being labeled in their charts as having “psych comorbidity,” “psych needs to be on board to manage psych issues,” or a “history of psych.”

I have witnessed family members experience discomfort around Widad – frequently denying their discomfort by assuring themselves and others that she is “just demented” – perhaps dementia is more predictable, or perhaps it is more culturally acceptable (people are expected to get dementia as they get older, but not expected to have schizophrenia). Patients with SPMI are skilled at sensing emotions from their providers. It is important to acknowledge these emotions despite being uncomfortable as well as validate our patients’ emotions – but not necessarily the content, especially if delusional. Providers who can acknowledge that emotions are not dangerous can provide reassurance to their patients, putting them at ease and providing them with a sense of safety that they are not being seen as “crazy.” 

Widad has touched many lives during her long life and continues to do so through lessons learned through her. Perhaps her story will touch the reader’s life and spark some curiosity and compassion for the humans behind the diagnoses. If Widad’s life story can help you find compassion towards people like her, then her life can continue to have profound meaning and her legacy can live in the minds of everyone who cares for people with severe persistent mental illness.

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