Module 1: Perceptions About Illness

Sickness as a Social Reality

An ill patient is not only suffering physically, but is also in the midst of an intense emotional experience.  Understanding illness in the social context of a patient’s life can be extremely beneficial when considering disease treatments.  Those with comparable diseases can actually have vastly different illness experiences due to external social factors. Social pressures can lead to health-related behaviors that are incongruent with the management needs of the disease.  Illness affects every aspect of a person’s life, and this reality must be taken into account by medical intervention programs.(1)

Stigmas surrounding diseases such as AIDS can postpone individuals from getting tested and can reduce devotion to treatment, which therefore increases the number of infections.  An individual’s response to stigma is significant: those who manage to resist it (regardless of poverty and discrimination) can achieve closure by accepting their diagnosis and finding a way to lead a happy life despite their illness, while those who succumb to the stigma are more bothered, upset, and unhappy.  Through illness narratives, it has been established that an individual may be capable of overcoming stigma once they are able to establish a new identity and social role.  Those living in poverty, or those who have little family support, may not have access to the resources that may assist in the formation of this new self.  Therefore, patients who are socially sidelined by illness may have a diminished chance of establishing such a role, in addition to having the highest risk of transmission, re-infection, and misuse of medication.  Community groups should focus the most on this sector of people, providing both social support and the medical treatment resources necessary for reforming identity and resisting social stigma.(2)

Julius, a 33 year old AIDS patient, demonstrates how support from family and other social groups is crucial, as he asserts:“Being accepted by my family has meant a lot to me.  I don’t think I would have made it without them in my life.”  This confidence that stems from social support allows Julius to view his illness in the most positive light possible and to consciously adhere to his treatment schedule.(3)

Phanuel and Paulinah, a married couple in their mid-thirties, are both HIV-positive.  The discrepancies in how they dealt with their diagnosis highlight how social treatment of HIV can greatly affect the patient’s happiness and life satisfaction.  Phanuel’s initial reaction was to act angry towards everyone and to isolate himself from his friends due to fear that they would judge him.  In contrast, Paulinah chose to be open about her status, which permitted her to foster friendships with other HIV positive community members.  Although the family ultimately decided to move to a new area in order to be anonymous, the different approaches demonstrated by each spouse reveal how stigma can either be life-changing or resisted.(4)

Illness Narratives

Illness narratives can be extremely helpful in allowing physicians to better understand and empathize with the patient’s disease experience.  The use of the illness narrative is growing progressively more common and crucial in medical education.  Medicine is a version of fundamentally applied humanism, and therefore a personal relationship should be fostered between the physician and patient during treatment.  The use of the illness narrative, grounded in ideas of moral growth and empathy, can be extremely valuable in medical education, and many medical schools today are starting to incorporate these personal narratives into their curricula.(5)

The “Family Centered Experience” is a mandatory two year program at the University of Michigan Medical School that utilizes illness narratives to create humanistic and patient-centered methods for treatment.  The program requires medical students to visit the homes of chronically diseased patients and talk with the families in order to better comprehend their background stories and different themes of their lives. Important issues to discuss include how the disease has impacted the individual and his or her family, the connection between physician and patient, stigma surrounding the illness, and potential hindrances in obtaining resources and support.  The students then interact with one another and with faculty clinicians to discuss their impressions, reactions, and insights derived from the conversations.  The program’s ultimate goal is to instill in the future generation of trained physicians a sense of the personal, societal, and psychological complexities involved in illness and how to best deal with them.(6)

At the Columbia University College of Physicians and Surgeons, a reflective writing exercise was conducted in a second-year medical student humanities seminar.  In the exercise, students created their own illness narratives, taking the perspective of an ill person’s body.  The activity generated a means for students to stimulate, provoke, understand, and explain illness experiences and observe their colleagues’ narratives as well.  From qualitatively analyzed evaluation comments, it was determined that the activity was thought-provoking and highly endorsed for future use by medical students and residents. 

As Dr. Sayantani DasGupta states,“the reflective writing exercise may be incorporated into medical curricula aimed at increasing trainees’ empathy.  Affording students and residents an opportunity to describe and share their illness experiences may counteract the traditional distancing of physicians’ minds from their bodies and lead to more empathetic and self-aware practice.”(7)

Emotional and physical vulnerability is rarely acknowledged among those involved with healthcare delivery, and doing so can move the providers closer to one another and, more importantly, closer to the community members and patients.(8) Building empathy is critical in a patient-physician relationship, and stories are one of the most persuasive mediums for humans to powerfully convey the emotions of an experience.  Illness narratives create empathy in several key ways.  They provide a look at the subjective experience of illness, which contrasts to the biomedical aspect of disease.  A face-to-face interaction with a patient and their family provides a small window into “the messy, confusing, always special context of lived experience.”(9)  The stories evoke in the listener, and allow for either a sense of identification with the patient or for self-reflection when one’s own perspectives and values are incongruent with the patient’s.(10)

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(1) Rich, M., Taylor, S., and Chaflen, R.  “Illness as a social construct: Understanding what asthma means to the patient to better treat the disease,” Jt Comm J Qual Improv, 26(5): 244-53, (May 2000). 

(2) Goudge, J., Ngoma, B., Manderson, L., and Schneider, H.  “Stigma, identity, and resistance among people living with HIV in South Africa” Sahara Journal, 6(3): 94-104, (Nov 2009). 

(3) Ibid.

(4) Goudge, J., Ngoma, B., Manderson, L., and Schneider, H.  “Stigma, identity, and resistance among people living with HIV in South Africa” Sahara Journal, 6(3): 94-104, (Nov 2009). 

(5) Kumagai, A.  “A Conceptual Framework for the Use of Illness Narratives in Medical Education,” Academic Medicine, Vol. 83, No. 7, (July 2008). 

(6) Ibid.

(7) DasGupta, S. and Charon, R.  “Personal Illness Narratives: Using Reflective Writing to Teach Empathy,” Academic Medicine, Vol.  79, No. 4 (April 2004). 

(8) Ibid.

(9) Kumagai, A.  “A Conceptual Framework for the Use of Illness Narratives in Medical Education,” Academic Medicine, Vol. 83, No. 7, (July 2008). 

(10) Ibid.