As parents, we are familiar with exhaustion—the bone-deep, foggy-headed fatigue that descends during sleepless nights or when caring for sick children. However, the documentary Unrest, released in 2017, explores a different dimension of fatigue: Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME).
The film introduces us to Emily Carter, a vibrant individual with impressive academic credentials from Ivy League schools, who finds herself immobilized on the floor, struggling to manage her camera. Shortly after, we see her husband, David, taking her to the hospital, where he expresses the difficulty of conveying her condition to doctors, cautioning that saying too little can lead to inadequate help, while saying too much may lead them to dismiss her as mentally unstable.
Emily’s experience with ME/CFS unfolds through a mix of personal video clips and reflections on her active past. She and David share their love story, underscoring the depth of their relationship. However, everything changes when Emily develops a high fever and never recovers. She describes the struggle of walking to get a glass of water, only to become too exhausted to move again. Initial diagnoses range from dehydration to stress, but a neurologist eventually suggests she has conversion disorder, asserting that her symptoms are merely psychological.
Emily highlights a common predicament for those with CFS: disbelief from others. The documentary includes a clip of a public figure calling it “the yuppie flu,” and news reports that question the legitimacy of the illness. As she battles her debilitating symptoms, her husband must assist her with even the simplest tasks, like drinking water.
Once finally diagnosed, Emily faces uncertainty about her recovery. “I had no idea if it would be months or years or decades,” she reflects. “It felt as though I had died while the world continued to move forward… It’s as if I never existed.” She candidly discusses the dark thoughts that accompany her illness, revealing that suicide is a leading cause of death among CFS patients.
Despite her challenges, Emily finds solace in connecting with other individuals suffering from CFS. One participant shares her harrowing story of being bedridden for years, her physical state deteriorating to that of a woman many decades older.
For those unfamiliar with CFS, Dr. Nancy Marks, a clinical immunologist, provides insight: “There is something fundamentally wrong at a cellular level. These patients are unable to generate the energy they need, leading to constant exhaustion. It’s often triggered by a viral infection, leaving patients with an immune deficiency.”
Emily discovers relief through antiviral medications and various treatments, including efforts to avoid mold exposure. At one point, she even attempts living in a tent in her backyard and self-infecting with hookworms as a desperate measure.
The documentary primarily focuses on her relationship with David, who grapples with feelings of being hindered by her illness. They feel trapped in a “amber of sickness,” yet his unwavering love shines through. He accompanies her on every unconventional treatment journey, only losing patience when asked to change clothes to avoid mold contamination. Their bond endures, illustrating that this narrative is equally a love story as it is one of illness.
Not all CFS patients are as fortunate; one woman faces abandonment from her husband, who believes her condition is fabricated and that distance will force her recovery.
The challenges of CFS are compounded by a lack of resources, understanding, and funding. Many people dismiss the illness as non-existent, leading to underfunding and inadequate research. After 30 years, there remains no cure, and a profound lack of comprehension persists, especially since 85% of CFS patients are women, with a staggering 75% unable to work.
Emily articulates a haunting fear: “Sickness and death don’t frighten me; it’s the thought of disappearing because of misrepresented narratives about me.” This sense of invisibility is a harsh reality for many.
Ultimately, Emily expresses a bittersweet gratitude for her life, despite her challenges. “I am still here. I am still here,” she affirms. This documentary becomes a testament to survival—the indomitable spirit to love and persist while the world appears to move on without you. CFS patients hold protests to assert their existence and the legitimacy of their struggles. Globally, 17 million people, including 1 million in the U.S., endure ME/CFS. It’s a real and devastating condition, but even in the darkest moments, Emily discovers glimpses of grace.
If you are facing challenges related to ME/CFS, consider reaching out to the supportive community at the #MEAction Living with ME Support Group. For additional information about the condition, you can explore this insightful essay in the Journal of Internal Medicine.
Summary
This documentary, Unrest, sheds light on the profound struggles of those with Chronic Fatigue Syndrome, focusing on the journey of Emily Carter and her husband David as they navigate the complexities of this debilitating illness. It highlights the disbelief faced by patients, the lack of resources for research, and the personal toll it takes on relationships, all while capturing moments of resilience and love.