You have to be able to hold two things in your head. This illness destroyed my life. But what it showed me, I could never give that back.
Jennifer Brea, Unrest
Please watch this film. It’s the story you didn’t know you needed. If you want to understand what Long COVID is about, all the articles and essays in the world won’t get you as far as Unrest. No matter that it came out in 2017 before the pandemic. The chronic illnesses that can ravage a body (and a population) after an infection have been around as long as people have.
Filmmaker and ME/CFS patient Jennifer Brea captures what life is like for her and her husband as they try to manage her illness. But Unrest is more than her story. Desperate to find others like her, she begins to reach out through online forums and recording interviews from her bed. The film opens windows into the homes (bedrooms, almost exclusively) of people from around the world living with ME/CFS.
The voices of researchers are also here, the ones trying to understand these chronic conditions. We also get a glimpse into historical and political contexts that our illnesses exist within – including legacies of underfunding, dismissal, and ridicule. But the dedication to changing that is also here. Alongside the advocacy of scientists pushing for more research is the commitment of the ill and their families to getting the treatment they deserve.
Despite its awards and positive reviews (100% on Rotten Tomatoes), I put off watching Unrest for months. I was certain it would be too harrowing. And while it has its hard moments, it’s beautifully made. My partner and I planned to just catch the first few minutes last night but then we couldn’t turn it off. We talked about it well past bedtime and it sparked more questions, more ideas for how to live in this upside-down reality.
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.
Jennifer Brea, Unrest
A visit to my doctor this week confirmed that my Long COVID has progressed to mild ME/CFS. Holding that truth in the front of mind for more than a few minutes at a time spikes my anxiety, which doesn’t help with calming my overactive nervous system! Even so, watching this film was comforting in its way. It helps to see a story that reflects my own. I am not alone here, not the first to navigate these dark waters. Others are out there managing this illness, advocating for research funding, sharing their stories and their practices for daily living. Finding pockets of pleasure and connection. Caring for and accepting the care of their dear ones.
Please watch the film. Share with me how it lands with you. Then if you are in the US, call your representatives and demand their support for a Long COVID funding bill: https://longcovidmoonshot.com/ (don’t worry that we’re past the Moonshot date… all the info is still relevant and your call will make a difference!)
Shannon E. Williams 
so sorry about how things are going, will check out the doc and let folks know.
Thank you for the recommendation. I find it just so odd that people aren’t told the potential serious consequences if they keep pushing and don’t rest. Myself included. Why didn’t the vast array of health professionals I’ve seen ever say, this sounds like CFS, you should take some time off work and rest. Instead it’s all how can we help you to continue to work? I’d like some rest breaks please. Oh no, we meant without affecting work, carry on making yourself more ill please. Sorry, rant over. I appreciate your posts, knowing there are others out there helps, though I’m very sorry you are in a similar position!