I got to see Unrest last night, the new documentary about Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS) by Jennifer Brea. At the time she got sick, Brea, a journalist, was too ill to write about her experience so she began filming herself. The film is her story of trying to get medical help and learning about the illness through conversations with doctors and other longtime patients.

I was reminded while watching it on the big screen at Coolidge Corner Theatre that just being able to attend the screening was a privilege. Most of the people Brea interviews in the film haven’t been able to get up and go to a movie theatre for over a decade. They are too sick to get out of bed. One featured patient hasn’t spoken in a year.  Even folks with ME who aren’t bed-bound are much too sensitive to sound, light, and scents to be in a movie theatre. I learned about the film from a friend who is bed-bound with ME, Lyme and severe mold sensitivity. She is so sick that something like trying to go to a movie theatre could be fatal for her. Still, she’s a huge activist and ME advocate and hands down one the strongest spoonie I know. It felt important to see the film, and bring people to see it, to honor her and the hard work of so many people like her.

I also felt called to see the film because I knew it would speak to my experience, specifically the often untold but infuriating story of living with a debilitating illness that is largely ignored by the National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC) and poorly understood by the medical field in general. ME is not a rare illness yet it gets a teeny tiny fraction of research funding. The same is true for Lyme. In both communities, suicide is very prevalent but because there’s so little money for research, we don’t have the data to show how widespread it really is.

Here’s what we do know about research funding:

  • Parkinson’s, which affects about one million Americans, garnered $169 million in the NIH Fiscal Year 2018 research budget.
  • HIV affects 1.1 million Americans and got an estimated $2,471 million in the same budget.
  • Lyme got $22 million. Because the NIH and CDC do not recognize chronic Lyme, we don’t know how many people are living with it. We know that somewhere between 300,000 - 500,000 people get it every year.
  • We don’t really know how many Americans are living with ME because it’s so poorly diagnosed but I’ve read numbers from 800,000 to 2.5 million. The estimated research funding for ME in FY2018 was only $6 million.

It’s important for everyone to understand just how many people are left behind by modern medicine and to know specifically which illnesses aren’t getting any attention so we can build the political will to change the status quo.

I took my partner and two friends to the screening and I’m asking all my friends and family members to see it. It’s also just an excellent film. It has 100% on Rotten Tomatoes so far so I’m not the only one who thinks so.

I often walk away from justice-oriented documentary screenings with a feeling of despair because I feel more educated about a problem that I feel mostly or totally helpless to do anything about. In stark contrast to that, I left Unrest feeling super pumped. It was so unbelievably empowering to see my struggles and the struggles of my community on the big screen. I was pleased by how Brea portrayed her difficult journey to getting a diagnosis. Just like me and so many of my friends and clients, her pleas for help with her mysterious and incredibly debilitating symptoms (i.e. not being able to walk) were initially dismissed by doctors as stress-related. She was getting her PhD at the time and her doctor explained her symptoms by saying she was probably too stressed about her exams. I was told the same thing again and again in my journey. One of my more painful memories is one of trying to explain to a rheumatologist that I couldn’t do my hair anymore because I couldn’t hold my arms up long enough to blow dry or even brush it. (This is why I have short hair today.) Her response? “Yeah. That stuff’s exhausting. I hate how much energy it takes to look nice too.” WTF LADY!?!? I’m trying to tell you I can’t hold my arms above my head. Brea shares in the film that it wasn’t until she showed one of her doctors a video of her in a moment when she was unable to move that he finally took her seriously. More doctors need to understand this aspect of the patient experience.

Unrest also shows, in a very inspiring way, just how much people with even very severe chronic illness can accomplish. Brea made the film from her bed, conducting interviews on skype with patients and doctors all over the world. The most common theme in all the reviews I’ve seen and heard about the film so far is how incredible it is that Jennifer was able to create it all while being so sick. It is incredible. And people like us do incredible things against seemingly impossible odds every day. People with chronic illness raise families, run businesses, make beautiful and poignant art, and get legislation passed. This isn’t common knowledge because for the most part these people are invisible, knocked out of society by the illness. There are also thousands of people who are able to function but because their illness is invisible, you would never know that they’re in excruciating pain every day, or pushing through severe fatigue. Part of my mission as a coach is to support more of these invisible people to be open about their experience, for the sake of their healing and as a public service, so everyone is more aware of how widespread these illnesses are.

Unrest highlights the invisibility problem and how it disproportionately affects women. It specifically calls out the long history of gender discrimination in medicine, going back as far as the Ancient Greeks, and shows so clearly how little we’ve evolved on this front. Thankfully the film is fueling a recent uptick in public discourse about gender bias in medical research and treatment. I appreciated this recent piece on the Harvard Health Blog and am eagerly awaiting Maya Dusenberry’s book Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick set to come out next Spring.

Finally, Brea gets mad points for her clear call to action after the film. Like the great organizer that she is, Jennifer joined us by Skype for a Q&A session after the screening and told people how they could plugin to help spread the message of the film. Her advocacy organization #MEAction is running a campaign to get the film shown in doctors’ offices, hospitals, medical schools, and in front of elected leaders to further educate people on ME/CFS and the broader issues in medicine that put ME/CFS patients at a particular disadvantage. A clipboard was passed around to capture the emails of interested parties. Nearly everyone in my row signed up to stay informed. Unrest is going to light a fire and I can’t wait to see where it goes.

Definitely, see the film and invite everyone you know so we can begin to turn the tide on this immense and unnecessary suffering. Click here to find a showing near you or find it on iTunes.