Jenny Horton, a doctoral student in English and comparative literature, is curating stories of patients living with a rare condition known as Ramsay Hunt Syndrome.
By Kim Spurr, UNC College of Arts and Sciences
Jenny Horton was diagnosed with juvenile rheumatoid arthritis when she was 2. Growing up, she spent a lot of time in doctor’s offices and initially thought she wanted to pursue a career in the medical field.
Horton later pivoted to focusing her academic studies on English — she had always loved reading. But while pursuing a master’s degree at Wake Forest University, she found a new calling. Horton was taking an English class on “Bodily Rhetorics” taught by Carolina alumna Erin Branch in which students studied the human body through a rhetorical lens. (Branch received her M.A. and Ph.D. from UNC-Chapel Hill).
“I was fascinated by the things we talked about in that course. It made the study of English feel very relevant to me,” Horton said.
Her M.A. thesis, directed by Branch, was titled “Posting to Engage: A Study of the Effects of Recovery-Oriented Rhetoric on Community-Building for Individuals with Eating Disorders and Associated Symptoms on Instagram.”
Today Horton is pursuing a Ph.D. in rhetoric and composition in UNC-Chapel Hill’s department of English and comparative literature. She is studying the rhetoric of health and medicine, focusing especially on illness and recovery narratives. She is also completing the graduate certificate in literature, medicine and culture.
Horton is involved with the Health and Humanities: An Interdisciplinary Venue for Exploration (HHIVE) Lab, an innovative research hub that harnesses the energy, talent and knowledge of Tar Heels working at the intersection of humanities, arts and health sciences.
Horton is leading a project through the HHIVE Lab in partnership with the Ramsay Hunt Syndrome Foundation based in Chapel Hill. Her team of research assistants will be collecting stories of patients who are living with Ramsay Hunt Syndrome, a rare condition affecting the facial nerve that is caused by the reactivation of the varicella zoster virus, the same virus that causes chickenpox and shingles. The condition often includes sudden onset facial paralysis, a blistering rash of the ear and hearing loss or dizziness.
Approximately five per 100,000 people are affected each year by RHS, but because it is often misdiagnosed as Bell’s palsy, the true incidence is likely higher, according to information from the foundation’s website.
The goal of Horton’s project is to build awareness about Ramsay Hunt Syndrome and to create solidarity among people who are affected by RHS by publishing narrative stories told from their point of view. The project with the foundation will last at least through the end of the year.
“Public awareness is really important,” Horton said. “During interviews with patients, we hope to find out more about misdiagnosis and the health challenges patients face, including mental health challenges. We want to give people the space to talk about their experiences.”
Horton said project members are hesitant to use the word “resilience” in talking about illness because sometimes that suggests that “being resilient is the right or good or only way to be.”
“I’ve had experiences like that when you realize the gravity of the language you are using,” Horton said. “We will be finding out the ways people are learning to live with Ramsay Hunt Syndrome.”
Horton is doing really well with her rheumatoid arthritis and said she is not at doctor’s offices as often today. But her own medical experiences and her academic studies have taught her to think thoughtfully about the interactions she has with health care providers.
“The fact that HHIVE is based in the department of English and comparative literature is meaningful, especially when it could be based in any number of departments,” Horton said. “The study of language is well-suited to the work we are doing with the Ramsay Hunt Syndrome Foundation because we are trained to be critical thinkers and to read people and texts very carefully.”
“How we talk about health is important, personal and relevant to real life.”