Week 13: The Invisible Kingdom of Chronic Illness and LGBTQIA+ in Healthcare

Gianna Paniagua, Human Experience

*Meghan O’Rourke, The Plight of the Invisibly Ill
*Harvard Gazette, The problems with LGBTQ health care
*Benjamin Blue, Ambulance Stories
*Damon Tweedy, Chapter 9: Doing the Right Thing from Black Man in a White Coat (pgs 203-
223)
*Part II Chapter 8: The Parallel Chart from Charon, Narrative Medicine (pgs 155-170)

Reflect on what narrative illuminates about experiences of chronic or invisible illness, or about experiences with healthcare for individuals who identify as LGBTQIA+. How can we use narrative to improve healthcare experiences and reduce health equity for these patient populations?

We entered into the “invisible kingdom” to learn more about experiences with chronic illness and LGBTQIA+ experiences in healthcare. We explored how isolating it can be for patient who have undiagnosed medical conditions or who suffer from chronic/invisible illnesses that requires multiple subspecialty care. The readings also illuminated the experiences of LGBTQIA+ patients within a healthcare system that is not always LGBTQIA+-friendly, and how we have room for improvement on an individual and a systemic level.

We have talked extensively this semester about the value of active listening, creating space for narrative within clinical encounters, and being willing to learn from patient narratives as we recognize the limits to modern medicine and medical knowledge. This week, I wanted to explore how we use narrative from a public health and policy standpoint to try to humanize the systemic experiences of patients with chronic illness/invisible disability and LGBTQIA+ patients. We practiced writing in small groups to approach different cases, such as raising awareness about invisible illness amongst student accommodations to advocating for gender-affirming care for transgender patients which is necessary and life-saving healthcare. These exercises demonstrated some of the potential as well as the challenge in using narrative to advocate for systemic change to promote health inequity.

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Thoughts?