Making the invisible visible during Women's History Month

Edith Williams, Ph.D., believes good old-fashioned footwork combined with science-based care can change the lives of people with lupus. “A mantra of mine is making the invisible visible, and I feel like my work has done that in a number of different ways,” said the associate professor in the Medical University of South Carolina’s College of Medicine.

 

We’re profiling Williams during Women’s History Month to highlight all she has done to elevate and address the concerns of women suffering from lupus, which has been called an invisible illness. The chronic disease causes the immune system to attack healthy tissue.

 

Williams’ efforts began more than 20 years ago with the Buffalo Lupus Project, which explored cases of lupus and other autoimmune diseases near a hazardous waste site. These days, her work involves a study looking at whether women with lupus can help each other improve their health through culturally tailored peer mentoring.

 

But Williams didn’t set out to become a trailblazer in her field. Growing up in Rochester, New York, she had a different path in mind. “My father is a physician. He's an obstetrician. I really thought I would follow in his footsteps. That's how I began my college experience, with the expectation that I was going pre-med and would apply for medical school.”

 

But things didn’t go as planned during her time at the University of North Carolina at Chapel Hill. “I got to my fourth chemistry class, and I was like, ‘You know; I am not enjoying this at all.’ I decided to switch my major to psychology. I also had taken a social and preventive medicine course and fell in love with the concepts of epidemiology and social and preventive medicine.”

 

In graduate school at the State University of New York, she got involved with the federally funded Buffalo Lupus Project. “As an African American female graduate student, they thought it would be perfect for me to be the person who actually went into the community and spoke with the participants about their experiences with the disease, because they were looking at a largely African American side of Buffalo, where this study was taking place.”

 

 

The work was career defining. “I learned about lupus and how these ladies and their families were affected in a very real way, how they managed the disease within their own families and their roles as mothers and wives and community advocates,” she said.

 

“Hearing more detail about their experiences during these in-home interviews really confirmed for me that this was where I wanted to focus my work.”

 

She knew she wanted to improve the lives of people with lupus and launched some self-management programs for the women she’d met. As she built on that, she became a faculty member at the University of South Carolina, won a Pfizer fellowship, received a National Institute for Arthritis and Musculoskeletal Disorders Mentored Research Scientist Career Development Award and moved to MUSC, where a mentor was building a public health program.

 

That mentor, John Vena, Ph.D., chaired the Department of Public Health Sciences. “We recruited her to continue her important studies of lupus in the African American community with a dual appointment in the Department of Public Health Sciences and the Division of Rheumatology in the Department of Medicine. Dr. Williams has shown herself to be intelligent, diligent, careful and insightful.”

 

He isn’t the only one taking notice. Williams was recently named one of the great women behind great lupus discoveries. And she’s thinking big. “Not only am I working to make the issues that African American women with lupus face more visible, more meaningful – I’m trying to make other experiences of women more visible.”

 

She pointed to a phenomenon known as the Superwoman Schema. “That’s what they call it in scientific literature. We care for children. We care for elders. We care for other generations of children that aren't ours. So we have a lot of grandparents who are now in the role of parents and particularly a lot of marginalized women,” Williams said.

 

“Underrepresented women face a lot of these different roles. They put their own care on the back burner and then end up in pretty bad shape. I want to make those circumstances visible as well, and let women know that it's OK, it’s even best, that you take some time to care for yourself.”

 

That’s especially important for women living with lupus. Williams loves watching the changes that can take place when they get the support they need — and feel seen.

 

“It makes them feel like they can do things they didn't think they could do. It allows them to feel motivated about getting up in the morning and facing their day and communicating with their families about how they're feeling. We've seen women switch careers, buy homes and start businesses — things they really needed a boost of confidence to do. They've received it from the camaraderie that we've been able to build within these projects that really link ladies together.”