Imagine that one day your body stops working as it should. Exhaustion engulfs you in ways it never has before. Your limbs feel like lead, and deep aches roll across your body. One moment, one day, one week, month or year, you feel fine, and the next you are overtaken by an invisible force that stops you in your tracks.
The only problem is that you look perfectly fine and healthy. All of your blood work come back normal. All of the scans and tests say you are the epitome of health. You know your body is not okay. But, the doctor says that physically you are fine. You tell the doctor that you have been feeling stressed lately, and he feels certain this is the culprit.
You go home and keep living normal life, because you want to believe your doctor is right. But as you keep going, you find your symptoms become worse and worse until you can barely get out of bed. You can barely think. You can barely move. The slightest noise or light causes unbearable pain. Something is terribly wrong.
This story is more common than you might think. In fact, each of the individuals in Jennifer Brea’s documentary, Unrest, have lived some version of this story.
Unrest is about a condition called Myalgic Encephalomyeltis (ME), known to many as Chronic Fatigue Syndrome (CFS). In Jen’s case, she developed ME following a fever. After dozens of doctors appointments, she was diagnosed with a conversion (psychosomatic) disorder by her neurologist.
It isn’t until Jen finds other people online struggling with the same symptoms as her that she realizes she has ME.
The Unrest website describes ME in this way.
Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems.
It often follows an infection and leaves 75% of those affected unable to work and 25% homebound are bedridden. An estimated 15-30 million people worldwide have ME.
Unrest is about ME, but even more than that, it is about finding the truth. The truth that ME is a real and physical disorder. It’s about conveying that truth to unbelieving doctors and an unbelieving world. It is about holding on to life and love and relationships when everything falls apart. It’s about not giving up and not giving in. It’s about figuring out how to live in the worst of circumstances, making something worthwhile out of the dregs of life.
It was a privilege to watch a screener of this movie this past weekend. And I cannot recommend it highly enough. I think it is hard to understate the importance of this film. ME is a largely unknown disorder, but it is not a rare disorder. Millions of people have ME, yet the amount of funding put towards ME research pales in comparison to other disabling disorders. One of Jen’s goals is to bring awareness of this little-known condition to lead towards better research funding.
I do not have ME, but this documentary was a grief-filled reminder of my own experience with chronic pain. Jen tells the truth of chronic sickness, and she tells it well. She shows her viewers a small picture of what it is really like to have a physically disabling condition.
At one point in the film, Jen says, “It was like I died but was forced to watch the world move on.” It is phrases like these that caught me in my throat. This is the truth. This is what it is really like.
Jen tells a story about illness that so many people have been waiting for. It is a story that does not end in death or recovery, like many stories about sickness do. It is the story of an illness that “might last the rest of your life and never go away.” It’s about living life right in that painful middle of ongoing sickness. This common story is not often told. Thank you, Jen, for stepping out and sharing your life.