Updated: Jan 24
Most of us know what it feels like to be sick, shivering under a mound of blankets after catching the flu, sounding like Darth Vader after a bout that inflames your throat like no tomorrow, but how many of us know how it feels to live with a permanent illness? Especially the ones that feel like a secret, like weekly battles for breath hidden behind an ordinary appearance, or a forcible removal from your university disguised as voluntary leave of absence after a schizophrenic break or a breast prosthetic to hide the aftermath of a battle with cancer. They all play a special role in society.
The “sick role” is a concept developed by American sociologist Talcott Parsons to describe the certain rights and obligations of the sick . The sick role exempts a patient from their usual social roles, but obligates the patient to actively seek help and recover . While most patients give up the sick role with the reclamation of health, those with chronic or lifelong illnesses are not given the same blessing. These limitations, accommodations, and deviations from the regularly scheduled program of the healthy leave an indelible mark on many lives and can go so far as to shape one’s identity, forcing those with chronic conditions to ceaselessly play the sick role.
“Memories of Breathing” by Monica Clarke chronicles the life of her daughter Sasha who lives with chronic asthma. In Clarke’s work, Sasha draws a distinction between the temporarily and permanently sick. Unfortunately, she is in the latter group, assuming a chronic sick role that prevents her from being on the same playing field as everyone else. Her mother, Clarke, laments on Sasha’s experience: “What is it like,” Clarke asks, “to feel that you can ‘never be on equal terms’ in a world that cries equality for all; to never be ‘perfect’ in a world that reifies perfection?” . This illustrates a violation of the sick role since Sasha will never fully recover. Sasha must act well until she gets sick, but cannot act too well lest she push herself and make herself become sick again . Sasha can neither operate within the normal rules of the sick role nor the rules that govern the healthy. This not only puts her life at stake, but forces her identity to develop around, and at the convenience, of her asthma. Sasha’s life and identity become so inexplicably tied to her experience in the unending management of her illness. The experience of asthma is Sasha’s experience . Who then is Sasha? Who is she without her illness? Her mother asks, “If the asthmatic body is not the soul, what is the soul of Sasha?” .
This idea of perfection is explored from a different perspective in The Cancer Journals by Audre Lorde. Lorde is diagnosed with breast cancer and undergoes a mastectomy, the removal of a breast. The narrative details her experience but a key point in her recovery was the prosthetic she was given post-surgery: a “soft sleep-bra and a wad of lambswool pressed into a pale pink breast-shaped pad”  to hide her missing breast. Lorde was also told by another survivor that with the sleep-bra, even she herself would never know the difference . But to that Lorde says, “she lost me right there, because I knew sure as hell I’d know the difference.” The prosthesis also exists in part to promote the agenda of a world obsessed with perfection, and Lorde rejects this idea as the “cosmetic sham”  conceals a key part of Lorde’s identity and struggle with cancer.
The idea that identity and illness are inextricable is also illustrated in Yale Will Not Save You by Esmé Weijun Wang, in which she details her experience with schizophrenia. She questions the language used to describe the relationship between the person and their illness. She contrasts it with the language of fighting cancer, where the word “battle” is used, subtly recognizing the fact that, no one ever says that a person is cancer, or that they have become cancer . This point is to emphasize that there is a person in the midst of the illness, that one day, the person may recover, upholding the standard of the temporary-ill state. But Wang quickly juxtaposes that person-first language with the statement, “What happens if I see my disordered mind as a fundamental part of who I am? It has, in fact, shaped the way I experience life” . This integration of the permanent illness as part of one’s identity is a significant difference between the temporarily and the permanently sick.
Permanent chronic illnesses leave an indelible mark on people’s lives. This may seem obvious, but the inability to become ‘well’ has far-reaching consequences and lasting effects. Many people take being healthy for granted, but even a minor cold, sprain or a light headache can leave one out of commission from “simple” tasks like breathing, walking, or daily activities. It is then important to understand the extent these permanent illnesses have on someone’s sense of self, and how health ultimately determines who we are and who we can be.
Mitchell, E. (2013, September 30). The Sick Role. nhs.uk. https://www.england.nhs.uk/blog/ed-mitchell-2/
Siegler, M., & Osmond, H. (1973). The “Sick Role” Revisited. The Hastings Center Studies, 1(3), 41–58. https://doi.org/10.2307/3527465
Clarke, M., (1944). Memories of Breathing: A Phenomenological Dialogue: Asthma as a Way of Becoming. Phenomenology + Pedagogy, vol:8 no., 208-223. https://doi.org/10.29173/pandp15142
Lorde, A., (1997). In Special Edition. The cancer journals. San Francisco: Aunt Lute Books.
Wang, E. W. (2019). Yale will not save you. Sewanee Review, 127(1), 18-38. doi:http://dx.doi.org/10.1353/sew.2019.0005