In this post, I’m actually going to talk about an illness I don’t have: myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Prior to my postural orthostatic tachycardia syndrome (POTS) diagnosis, I was diagnosed with ME/CFS because many of my symptoms were the same: extreme fatigue, muscle pain, post-exertional malaise (worsening of symptoms after activity), sleep difficulties, autonomic symptoms, headaches, sensitivity to light, etc. When you compare the symptoms of POTS and ME/CFS, they’re actually very similar. However, POTS can be diagnosed with a tilt table test, and there is still no single definitive test for ME/CFS. Once I failed the tilt table, it became obvious that my symptoms were caused by POTS.
Recently, I watched a documentary called Unrest. It’s the story of (and directed and produced by) a young woman, Jennifer Brea, who has/had severe ME/CFS. The documentary is composed of Jennifer’s early video diaries, interviews with specialists and other ME/CFS patients, and information about the history and current status of ME/CFS. I should probably disclose that I contributed to the film’s Kickstarter fund and received a free copy of the movie as part of my support, but I do not receive any benefit for reviewing the film, or if you decide to watch it.
I finished the movie 3 days ago, and haven’t been able to stop thinking about it since, because it was that impactful. It’s beautifully shot, and it’s raw and existential and poignant. It does an amazing job of highlighting the problem with the prevalence of illnesses like ME/CFS and POTS, and the meager funding allocated to such illnesses. ME/CFS affects over one million people in the US, POTS is estimated to affect between 1-3 million. They’re not rare.
And I can honestly tell you after watching this movie, I had no idea. Even living with one, I had no idea how severe and isolating chronic illness can be, or how tragic. That people are still able to find reasons for living is truly humbling.
The film premiered at the Sundance Film Festival and won the Special Jury Award. It is one of the most honest and intimate accounts of illness that I have ever seen. Friends, this movie is worth an hour and a half of your time. You’ll shed a few tears and you’ll fall in love with Jennifer’s husband, Omar. If you have an invisible illness, the movie will make you feel less alone. If you don’t, watching a woman put her feet on the ground for the first time in 6 years (not even stand up, just sit up in bed with her feet touching the ground) will make you grateful for your life.
I believe that illness is genetic and environmental, but it’s also random and unforgiving, and there’s no rhyme or reason to who it captures. I believe there’s a cure for everything, we just haven’t found most of them. And I believe that those of us who can put our feet flat on the ground, who can leave our beds, must bear witness to those who can’t. Because if we’re not certain that a falling tree in an empty wood produces a sound, how can we expect patients to live if they’re never seen?
Friends, please consider watching Unrest. The movie is available for download via iTunes, Amazon video, Google Play and other platforms. It will be available for purchase on dvd in December. And, on January 13th, 2018, a theater in San Diego will host a screening (click here to check for screenings in your city). Read about ME/CFS here, or check out my blogger friend’s site about ME/CFS here and here. Search for severe ME/CFS on YouTube and watch a few stories. Part of understanding our world better, is understanding its suffering.
“This illness destroyed my life, but what it showed me, I could never give that back. I want to be well, I want to wake up tomorrow and be well, and yet I am grateful for every inch of my life. I am still here. I am still here.” – Jennifer Brea
Smell ya later.