Unrest

One of the most compelling documentaries I've ever seen. From moment one ("Princeton Veterinary Hospital") Jen and Omar reel you into the mad, new life Jen's illness has shaped for them. The movie goes beyond educating people about a poorly-understood illness. Instead, it vividly recreates the reality of Jen and the other patients, and it does so with such humor, humanity, and loving-kindness that you feel as though you know all of these people and are deeply invested in their small triumphs. An absolute must for any documentary devotee, and anyone who struggles with chronic illness or is struggling to understand the world of someone who does.

I know this is full of superlatives, but I can't help it. Ugly crying was involved when I saw this story, but it somehow manages to be uplifting instead of despairing. I can't recommend it highly enough.

Jen Brea started making this film while she was bedbound with a terrible - and terribly misunderstood - illness. It took her three years or more, but the finished product is very polished and emotionally devastating - while also offering notes of hope and uplift. The film follows Brea and other patients as they struggle to find sympathetic doctors and caring family members. Jen's story is the main throughline - she hits a low point after doctors tell her she has 'conversion disorder,' and then she begins to find meaning by connecting with other patients online. We see her formulate the idea for a film as she begins talking with other patients. It is a heavy film about a neglected illness - but there are moments of levity and joy sprinkled throughout. At the screening I went to, the audience laughed at appropriate spots. And at the end, a women in the audience stood up and said she finally understood what had been wrong with her for so many years. Getting this film out to medical professionals will help fill the gaps left by medical schools, which do not teach very much, if anything, about the illness known as myalgic encephalomyelitis. The CDC renamed in chronic fatigue syndrome in the 1980's, but as you'll see in the film, that name has done a lot of damage in terms of misperceptions and stigma.

Brilliant film. Compelling, informative, inspiring. Not to be missed.

Jen Brea is one of the severely ill due to ME/CFS. She films herself, directs, interviews doctors and patients via Skype, and edits mostly from her bed in order to document the severity of her disease (and millions worldwide) and how she and her husband, her caretaker, now have to forge a different life than the one they had imagined for themselves.

Patients experience neurological issues with sound and light sensitivity and coordination, pain, POTS, cognition issues, and debilitating fatigue. Exertion whether physical or mental will bring on crashes where symptoms worsen. Doctors and researchers discuss the disease.

I am one of the millions missing, but one who is not bedridden, and I can still work, though at a much diminished capacity. Jennifer's attempt to describe her life and her illness is much needed. I was in tears as she described the difficulty of getting a diagnosis. When I got sick 25 years ago, it took me 6 years to be diagnosed. I was hoping that diagnosis was a little further along than it apparently is in the medical community. That was a major disappointment for me. I wish she had talked more about the cognitive issues. Yes, ME is physical, but the brain fog, the inability to concentrate or stay on task, the disorganization that came with the condition, the struggle to perform cognitive tasks that were once easy (reading maps, remembering how to get somewhere you should be able to, forgetting appointments, short-term memory problems, etc. etc), all add another layer to an otherwise debilitating condition. My accolades for Jennifer for the supernatural strength and commitment it required to put together a great snapshot of our shared nightmares.