The Beginning
Unrest is a documentary filmed by Jennifer Brea where she shares her experience of myalgic encephalomyelitis (M.E.), also known as chronic fatigue syndrome (CFS). Brea was in the middle of pursuing her Ph.D. in government when she began experiencing feverish and painful symptoms. With the support of her husband, she sought out a variety of medical appointments. Her issue was not lack of access to healthcare services (e.g. affordability, geographic location). Instead, it was how her illness was being perceived. In her case, most physicians were not able to figure out her illness.
Her experience of navigating the healthcare system, specifically as a patient with a rare illness, led her to film her experience. She documented everything from the range of daily symptoms to her medical appointments. She was first diagnosed with conversion disorder but continued to seek other physicians for their opinion because she was questioning her unrefined diagnosis. Eventually, she was properly diagnosed with M.E/CFS.
When she started to learn about CFS, she researched the illness through various disciplines, which were chemistry, history, gender, and psychiatry. Some of her work led her to discover that CFS is diagnosed mostly in women, the research is severely underfunded, and other people around the world are experiencing it as well.
Community
Brea first saw videos of other people sharing their experiences where she recognized their symptoms and was able to relate to them. She found a community within them and reached out to them to learn more about their experiences. Each person who shared their own distinctive experiences was disclosing other problems that were simultaneously occurring in their lives.
The problems that occurred aside from M.E. included family members questioning the illness and eventually leaving them but returning when their daughter was diagnosed with M.E. Another person was very social and outgoing until their illness led to experiencing loneliness and isolation. Their mental health was severely close to suicidal ideation.
A medical system issue occurred when Karina Hansen from Denmark was removed from her family by their doctor over child abuse suspicion. Her parents shared their distrust and their doctor’s power abuse of the system. They exercised their right to fight for their daughter by testifying against the doctor.
Health Advocacy
Everyone was tired and scared, waiting for a cure or even just public acceptance, especially from the medical community. The virtual support community that was created brought hope, fueling their motivation to advocate to be seen and taken seriously so M.E. could receive funding to further alleviate the knowledge gaps. They planned tributes on the streets and in front of government offices honoring those who passed away, but also to raise awareness. Near the end, Brea was reflecting on her progress regarding her health and growth journey and how she must not give up the fight and continue to express gratitude to help her keep going.
Personal Connection to Unrest
As an aspiring sociocultural health educator, researcher, and impact strategist wanting to work with various South Asian communities, Unrest was a bridge that connected me to the issues and then to these cultures. I was already familiar with familial caregiving because our cultural roots helped my family overcome personal health experiences with our personal partnerships. Health partnership in our culture is the idea that we take care of each other for the rest of our lives, despite family conflicts. I realized not everyone has this support system to guide their health journey. Their journey would suffer without such partnerships in navigating the complicated social systems that lack adequate access to care, resources, and cultural humility.
My face lit up when Brea started discussing her illness in-depth, expanding to various disciplines based on her research. My connection deepened as the perspectives had some relation to my college degree, which was interdisciplinary social sciences. Some of the courses I took were relevant to the film such as clinical psychology, medicine and society, general chemistry, and sociology of sex and gender. It was also related to my current degree program which is interdisciplinary and looks at health through sociocultural factors. It was reassuring to learn that other people who are well-known experts within their field believe that there’s a strong need for diseases to be examined beyond the medical model. This reminded me of the biopsychosocial model that holds to the idea that biological, psychological, and social processes are integrally and interactively involved in physical health and illness (Suls & Rothman, 2004). This can be applied to developing strategies to expand reach and build trust with members by alleviating knowledge gaps. These efforts depend on academic-community partnerships, evidence-based knowledge, and cultural preservation.