PAIN POINTS

pain points

a research project exploring the cultural and medical journey of pain

methods: interviews, literature review, user testing, mixed media research (alternate methods of inspiration)
tags: women's health, chronic pain, activism, cultural study, participatory design
outputs: body of research synthesized into film, zine, posters; physical products; public exhibition

context

Women are misdiagnosed, mistreated, and misunderstood when in pain. My final Masters project explored how to deliver agency back in the hands of women as experts on their own personal medicine by equipping them with a toolkit and vocabulary to communicate their pain and by visualizing and quantifying invisible pain.

Research questions probed into the medical and cultural journey of pain, focusing on chronic pain patients, especially those with endometriosis and fibromyalgia. The end body of research and design work featured in a public exhibition at the Truman Brewery in East London in July 2023.

fibromyalgia

endometriosis

^ chronic pain & fatigue. no cure.

uterus lining grows outside of it. >
surgeries but no real cure.

1:20

affected, mostly women

11 / 18

tender points for diagnosis

1:10

women affected

7.5

average years to diagnosis

film

This film gives an overview of the project. In one thread, I use my physical designs to explore the pain in my chronic muscle knot that day. In the other thread, the words of women I interviewed or whose written quotes I took inspiration from are heard.

mixed media research practice

This project showcases my mixed media research practice, which supplements literature review and interviews with cultural-social engagement, visual experimentation, and alternative sparks of inspiration. This includes museum exhibitions, cultural events, and webinars. My research outputs can extend to exquisitely designed elements. This illustrates the breadth and depth of research that I can do for a project to create an intense, extensive understanding of a subject.

research questions

How might patients regain agency and ownership of their bodies?
Doctors may be the experts in general medicine, but everyone is the expert in their own personal medicine. How might medical consultations be more equal partnerships?
Most provocatively, is medicine disrespectful to patients’ bodies? Are doctors less considerate of bodies than alternative pain professionals such as acupuncturists and BDSM professionals?

This is not to discredit healthcare professionals. However, our medical systems, which prioritize speed over humanity, are flawed. How might we fix this?

literature review: to gain a broad understanding

articles + books

found through Google Scholar, PubMed, or recommendations from librarians and scholars

Amy Berkowitz, Tender Points
Dianne Hoffman and Anita Tarzian’s scientific study The Girl Who Cried Pain
Steve Haines’s Pain is Really Strange
Elaine Scarry’s The Body in Pain
Caroline Criado Perez’s Invisible Women
Brian Teare’s Neither Chaos Nor Quest: Towards A Nonnarrative Medicine

exhibitions + events

found through design current events and endometriosis / chronic pain groups

V&A sculpture gallery
Japan House kumihimo + knots exhibit
Imperial Late: Play
Science Museum + Wellcome Center medicine exhibit
Design.healthcare webinar: RCA, Helen Hamlyn Centre, Helix Centre, RISD Center of Excellence
Below the Belt: endometriosis film screening
Tate Modern retrospective on Magdalena Abakanowicz

interviews & synthesis

interviewed endometriosis patient to understand her medical journey
insight: gap between patient & doctor communication styles
interviewed doctor to confirm medical translations of words
insight: doctors constrained by time, a system problem

interviewed acupuncturist to understand alternative medicine
insight: outside of medical system, patients have more agency and partnership

After the interviews, I realized the necessity of a visual vocabulary of pain to decrease the gap between doctors who may prefer more technical terminology and patients who are coming from more emotional and contextual interpretations of pain.

As part of synthesis, here is my video summarizing key quotes from the endometriosis patient.

vocabulary toolkit: communicating pain

prototypes & user testing

The prototypes evolved with many iterations and rounds of user testing to become more ergonomic and intuitive. The words and visualizations also solidified, based on input from patients, doctors, and other healthcare professionals.

"This type of toolkit will allow me to be active in giving shape to my pain and words.” -- patient

two alternative research probes

study into Japanese shibari, a medium of rope binding art, to understand pain and the body

V&A photo study of 'perfect bodies' + the gendered difference between the pose male + female

visualising pain

I began to delve into an artistic visualisation of my muscle knot and how that could work in conjunction with the toolkit through a workshop to facilitate patient's understanding of their pain before they communicate to others. This brings language to pain.

"engineering" diagrams to quantify pain

In addition to these prototypes, I explored different ways to represent the rich arena I uncovered that might not have made its way into the final prototypes. This resulted in the creation of engineering-inspired diagrams to quantify some of the issues that patients face. I chose engineering diagrams because they are typically associated with precision and facts, things that can lend themselves to the amorphous area of pain.

Exploded axonometric diagrams of the most common pills given to patients of fibromyalgia and endometriosis reveal dangerous side effects.

A sankey diagram shows drainage and fatigue that patients cope with. The sankey diagram was created from data from an excel spreadsheet, and then stylized on Illustrator.

preparation for the final exhibit: stakeholder
identification

primary audience: patients of fibromyalgia, endometriosis, and other invisible / chronic pain syndromes who would like to regain agency of their pain and their bodies
secondary audience: doctors, pain professionals, and other healthcare workers who can become more aware of the patients’ side
tertiary audience: people in positions to make change – seed funders or governments that fund medical researcher, research institutions and hospitals

exhibition

These research outputs have been consolidated into a research journal, zine, and film for my final exhibition at the Truman Brewery in East London, which was open both to industry and the public. Here are some photos from the exhibition, where I was happy to share my research and prototypes with the wider London community, as well as some social media response to my work.

As an impact of this project, I am in continued discussions with RISD Center of Excellence researchers on workshops that can be set up at pain clinics. In future, I'd like to circulate this toolkit to more patients who have chronic pain and advocate for medical research into better alternatives to treat pain and better medicines without adverse side effects.