A powerful documentary, the movement it sparked, and an interview with Jen Brea
**Note: if you do nothing else today, go on Netflix and watch Unrest. Do it. (It may be triggering for people with chronic illness)
I saw a trailer, a few months ago, for a documentary called Unrest. It began as a personal project for Jen Brea. She fell ill with a strange virus, and never recovered. While her body was no longer fighting the virus, she had fallen into a cycle of chronic fatigue, pain, and cognitive dysfunction, among other symptoms, and couldn't find her way out. Doctors didn't believe her, friends moved on with their lives, and she lost the amazing life she had worked so hard to build. Even her ability to read and write slipped away, so she began recording her thoughts in video journals.
The documentary begins with these low-quality video clips, never intended to be made public. They are intimate glimpses into moments of anguish and confusion. She then discovers thousands of people around the world with similar stories, and begins connecting
with them. The documentary explores their stories and picks up on hers in earnest as she seeks community and a wide array of treatments. She finds stories along the way of injustice around the world -- a girl ripped from her family for hysteria treatment without her (or her parents') consent; top scientific researchers unable to get funding to search for answers; people taking their own lives as they are shunned by doctors and family members. The documentary ends with a rallying cry. Demonstrations for the estimated 20 million people suffering with CFS/ME take to the streets for the #millionsmissing movement.
The entire film still haunts me, but a few moments hit home particularly hard. It begins with her husband saying they have to be careful what they say at the hospital -- too much, and they'll be written off as crazy, but too little and no one can help. I remember going to see a neurologist (who, by the way, wrote me off as "just anxious") and filling out the pre-visit questionaire. The forms were very thorough and asked about symptoms in every system of the body. I began answering honestly, which meant checking off about three quarters of the symptoms listed. My mom, a physician, looked over and said that I needed to erase some, because if he sees them all checked off he won't bother reading the notes and will just assume I'm crazy. She and I read through the whole packet and strategically planned which check marks to erase. Another line in Unrest that stuck out to me was one man admitting that the cognitive issues were the hardest part for him. Although there was no follow-up to this comment, it made me realize that I agree; I can struggle through physical illness, but not being able to express myself coherently is the worst. It feels like loosing my self, rather than just my body. I wish she had gone into more about that concept.
In general, I loved the raw footage of what it really looks and sounds like. So many of my bad moments are hidden from the world. I flop on the ground or thrash in pain in my bed, hoping no one will see me. It was breathtaking to see her writhe on a huge screen for everyone to see. She also captured the rollercoaster of treatments. She'd find something that worked, have a boost of energy, hike a mountain or go to a party, and then crash. You could see it coming in her eyes and posture, and I found myself simultaneously moaning (like in a horror movie when the protagonist opens the door you know contains the killer), but also feeling triumphant that she was able to have a spike of hope and fun.
I don't think I could ever write something that would do justice to the experience of watching this documentary surrounded by fellow spoonies at the collective retreat. It was horrifying to see her struggle, unable to get off the floor, fighting just to get up the stairs or across the hall to the bathroom. It was also incredibly thrilling, though, to bear witness to someone else living my worst moments. I could see in her face the physical struggle, fatigue and pain, but also the emotional struggle -- fear, anger, confusion, grief, guilt at putting her husband through it... the list goes on. Sharing this experience with other spoonies just elevated the feeling of being seen and represented; they clearly also knew the struggle and were feeling all the feels with me.
Something kept nagging at me, though. The diagnosis explored in film is ME/CFS. I couldn't help but notice that so many of her symptoms were mine as well, and that avoiding certain foods or environmental factors helped her the way it helped me. I kept hearing Dr. Afrin's voice in my head, sharing his hypothesis that ME/CFS, fibromyalsia, and other mysterious diseases were really MCAS in disguise. I wondered if she could actually find relief in MCAS treatment.
A few weeks ago, my new spoony friend Cara interviewed Jen Brea on her awesome podcast "In Sickness + In Health" (which you should take a minute to listen to!!). I laughed, cried, and overall LOVED this interview. It was everything I'd hoped for! And it answered my question -- Jen admits at the end that she has since been diagnosed with MCAS and POTS! She doesn't have EDS, but a family member of hers does, so it's probably in her DNA somewhere. I wish this could have been part of the film, because I think it could have raised good questions and helped some people find answers, but I'm glad it came out in the podcast.
I've done some more digging since then and found some studies on MCAS in ME/CFS patients. One in particular found 60% of ME patients tested for MCAS came back positive, which is a test with very frequent false negatives!
Hopefully this documentary will not only inspire and uplift people like me, but also inspire change. Maybe it will lead more doctors and families to accept ME/CFS and other invisible illnesses as legitimate. Maybe it will lead to more research and funding. Maybe it will lead to more communities rallying around their millions missing. We will be having an event in Burlington for the national #millionsmissing #MEAction day on 5/12. More on that later!