Illness Narratives

In my role as an Earl R. Franklin Research Fellow in Human Development and Lead Researcher, I spearheaded a project on patients living in the Chicago metropolitan area with multiple sclerosis (MS), a neurological autoimmune disease.

I designed and directed the study through conducting literature reviews, grant writing, designing interview protocols and methods, recruiting participants, conducting interviews, coding and analyzing the research, collaborating with an interdisciplinary team.

Through in-depth, semi-structured interviews, I examined the patients’ concepts of body, selfhood, disease, and health.

This research culminated into writing an honors thesis and award-winning paper.

Presentations

I received an award for a paper that I adapted from my thesis by the National Association for the Practice of Anthropology (NAPA) at the American Anthropological Association/Canadian Anthropology Society annual conference in Vancouver. (If you’re ever in Vancouver, go here. It’s magical.)

I also had the honor of presenting my research to the American Anthropological Association virtual Raising Our Voices event with my talk sponsored by the Society for Psychological Anthropology.

Writing Sample:

Waiting for Truvada

Paul* knocked hesitantly on his mom's door.

It was the summer of 2014 in the suburbs of San Francisco. Paul was 18 years old and had recently graduated high school. The son of Japanese immigrants, he had his father's dark skin but looked more like his mother. At around 5'6 in height, his shorts were often too baggy and he could never leave home without a belt. He would suck in his cheeks to look more adult, but on this day he felt like he was regressing.

Paul had come out as gay yet was still “a little bit in the closet.” As he learned from watching films, this post-graduation period of his life was supposed to be one of sexual awakening. But now here he was, having to confess “something bad” to his mom.

Paul's mom had an approachable aura and soft eyebrows, a remanent from the time she over-plucked them as a kid. She could get fiery, but she exuded warmness and was always the first person Paul would turn to to discuss his mental health.

“Mom,” Paul called out. “I'm really nervous about something. I think I exposed myself to HIV.”

“Oh,” his mother responded.

Paul never talked about sex with his parents before. Just a couple of days prior, Paul had sex for the first time and thought he may have contracted HIV in doing so. As someone who felt self-conscious about his acne and “greasy hair,” he finally felt validated to be found sexually attractive by someone. It was only the second person he had ever kissed.

She did not ask any questions. “I understand. We can go to the sexual health clinic,” she told him. She remained calm, possibly sensing Paul's anxiety.

Paul hated waiting in the clinic. It felt sterile and void of any compassion. Posters about HIV prevention leered over him. Judge Judy played on a television in the background. His paranoia was building, as if he were waiting to be interrogated. Under the fluorescent lights, the only sign of humanity was his mother sitting calmly next to him.

A nurse called out Paul's name. As she pricked his finger, the conversation was kept short. The results would come back in twenty minutes.

When they called Paul back in, they informed him that his HIV results were negative.

“Remember to always use a condom. You're young,” the nurse informed him. “And not that experienced.”

Paul felt no sense of comfort. He had used a condom and was afraid that the test could have been inaccurate. While researching HIV symptoms online afterwards, Paul stumbled upon a medication that was approved by the FDA two years prior; Truvada, a pre-exposure prophylaxis commonly known as “PrEP” that can help prevent HIV infections with an effective rate of about 99%.

Once on his own at college and over 2,000 miles away from his parents, Paul scheduled an appointment at the student health clinic to discuss this new drug.

“How many partners have you had sex with?” the doctor asked him.

“2 or 3,” Paul responded.

The doctor paused. “That’s not enough. I can’t recommend PrEP for you.”

“What?” Paul uttered in confusion.

“You need to have had sex with at least 10 or more partners for me to prescribe you this drug.”

Paul's heart sank, and he recalculated. “Oh yeah I’m having so much sex right now. I’ve had 11 partners.”

The doctor stared at Paul.

“I think this is right for me,” Paul said.

The doctor conceded and wrote the prescription.

Paul now had to get pre-approval from his insurance company, order the prescription from a speciality pharmacy, and be tested for sexually transmitted infections before receiving the prescription.

Back at the clinic, a nurse practitioner drew blood, swabbed his throat, and provided him a cup for urine.

“We also need a rectal sample,” she implored. With his throat aching and his arm pulsing, his body felt prodded and scrutinized.

After two months of lab tests, pharmacy calls, insurance applications, and unrequested abstinence, the prescription was finally ready. As Paul swallowed the large, light blue pill, he could not help but feel an overwhelming sense of pride. His beginning had awakened.

*Names and identifying information have been changed.

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