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When “It’s All In Your Head” Is The Diagnosis: Jennifer Brea & Laura Poitras on Portraying Chronic Fatigue Syndrome
Nate von Zumwalt
Tuesday, September 19th, 2017
There are few attacks on the human psyche more disempowering than being told that your experience is invalid. It’s where filmmaker Jennifer Brea found herself time and time again amid a desperate search for medical truths as she gradually fell more incapacitated by the symptoms of a mysterious illness. An active Harvard PhD student at the time, Brea was eventually rendered bedridden and motionless, an official diagnosis proving frustratingly elusive. There was only one explanation the medical field would grant her: It was all in her head.
Charged with the task of diagnosing her own illness, Brea began filming herself -- often in her most harrowing moments -- and uncovered an online community of sufferers with experiences nearly identical to her own. She was officially diagnosed with M.E. (Chronic Fatigue Syndrome), an incurable disorder characterized by unrelenting exhaustion that affects an estimated 15-30 million people worldwide. Serving as equal parts evidence and catharsis, Brea’s self-documentation created the foundation for a vivid and honest portrayal that presents one of the first -- and definitely the most profound -- illustrations of M.E.’s devastating effects. It’s all captured in Unrest, Brea’s Sundance Film Festival award-winning documentary that opens in theaters Friday, September 22.
Prior to premiering her film last January, Brea workshopped early versions of her project at the Documentary Edit and Story Lab under the mentorship of renowned filmmakers, among them Oscar-winning filmmaker Laura Poitras (Citizenfour; Risk; The Oath). The two reconvened recently for a conversation on the seemingly endless decisions involved in personal filmmaking and the journey that Brea traversed to arrive at the making of Unrest.
Laura Poitras: Can you describe the first time you filmed yourself? Take me to that moment.
Jennifer Brea: It was not an emotional decision; it was a practical one. I had always kept written diaries but when I first became bedridden, I lost the ability to read and write. My whole life, I wrote to understand what I thought and what I felt. And I was going through the worst thing that had ever happened to me, and suddenly I had no way to express that or possibly understand it. All I had were these overwhelming emotions.
A friend of mine had suggested that I record myself with audio because maybe at some point I would get better and I would want to write about it and that I should capture what was happening in the moment. I always had my phone in bed with me, so I just started recording video. At the beginning it was really too much to talk about with my husband, it was too much to talk about with my friends, so i just needed someplace to put all of that fear and grief and uncertainty. That was how it started. I don’t think there was a particular decision moment in recording.
Laura: So the first time was originally to narrate to yourself?
Jennifer: I honestly just wanted to have someone to talk to and be super candid about what I was feeling.
Laura: At this point how long had you been sick -- when you started filming yourself?
Jennifer: Things had been going weird for about a year, but i was pretty mildly affected. I didn’t know what I had and I kept being told that I wasn’t actually sick. But i started filming myself a couple of weeks into becoming completely bedridden, and it was in part because my neurologist told me that I had conversion disorder, the modern name for hysteria. I was having all these symptoms that I couldn’t even name, and things were happening to my body that i didn’t know were possible, and so I knew something was really wrong. At the same time, I also was faced with the reality that I wasn’t going to be able to get any help. I think both of those things happening at the same time meant that I was just really scared.
Laura: The hysteria diagnosis is one of the most horrifying parts of the film. This idea that anyone could be so sick and that somebody of authority, especially a doctor, could actually say that it’s just in your head. So you started filming two weeks after that? I think of the film as a kind of evidence -- as a response to the failure of the medical establishment.
Jennifer: Well it’s even more specific than that. In so many of the diaries I think I’m probably talking back to that neurologist [who diagnosed me with hysteria]. I couldn’t remember any moment in my adult life when I had felt that disempowered and that erased. In grad school you’re training to become a professor, which means that you’re the person who stands at the front of the room and is the expert on whatever you’re the expert in. You learn to claim the authority of your expertise, but at the same you are trained to be humble about how hard it is to know anything about the world, how tricky it is to estimate the truth. And that was the culture I was being trained in.
So, to go into the space of the doctor’s office and be told, “No, everything is black-and-white and it’s clear. I’m the expert and you’re not the expert on your own body or your own experience. What i say is what is true.” And it is true, right? The doctor determines everything from how you’re cared for and how other providers will proceed in the future and what you have access to in terms of medication. That whole time I think I was just trying to figure out, how do I get help? You can’t just fight back in the ways you might normally want to fight back, or by being confrontational, because all you end up doing is confirming the suspicion that everyone else already has, which is that maybe you’re crazy. But I actually started to realize that that was a dynamic that women have been experiencing since the beginning.
Laura: I’ve had a similar experience with the label of paranoia. Something that’s hard to prove but that you know to be true. People sometimes say to me, “You have a reputation for being paranoid.” And I say, “Isn’t that supposed to apply when something isn’t happening. Isn’t that supposed to apply when you don’t have an FBI file, or on a watch list?”
Jennifer: I think something that was really frustrating for me was it felt like everybody’s job was just to calm me down or reassure me. Like the worst thing that I could possibly be was scared or upset, and that the act of calming me down was more important than finding out what was wrong.
Jennifer Brea with her husband, Omar.
Laura: I’m really fascinated with the self-filming. For me that is the heart of the film. When you first started filming yourself, at that point did you think you were making a documentary about this illness?
Jennifer: No, I definitely wasn’t. I think I was filming myself on and off for a year before I decided that I needed to make a film. That was a very specific decision moment.
Laura: Can you describe that moment?
Jennifer: Yeah. The way my disease functions is that I have whatever budget I have of energy every given day and it can fluctuate year-to-year, day-to-day, hour-to-hour, and if I do too much then I crash. I made the mistake of talking for too long on the phone with a friend and I was home alone -- my husband Omar was away traveling, and I couldn’t even get up off the couch. Some of this footage is actually in the film. I ended up being stuck in my house for 24 hours without any way of moving or calling for help or really doing anything until finally Omar came back and took me to the emergency room. And I think it was really in that ER, when I couldn’t stand up straight, I had all the symptoms of what is essentially aseptic meningitis and because I had the diagnosis of ME/Chronic Fatigue Syndrome, the doctor -- even though I told him I couldn’t walk, couldn’t touch my chin to my chest -- didn’t touch me, he didn’t examine me. He diagnosed me with a headache and told me to go home and take aspirin.
I had so many interactions like that. That was the moment I realized at that point there was no help. No matter how bad things got and how sick I was, I knew that not only were these spaces of clinics and doctors’ offices and hospitals not places where I could get help, they were actually on some level unsafe. I realized at that moment not only were they unsafe for me, they were unsafe for millions of people.
Laura: And so you said, “I’m going to make a film about this?” Because you could have written a book...
Jennifer: But I couldn’t have written a book. At the very beginning I would write two sentences and pass out. I used to read a book a week, and I haven’t read a book in five years. I started filming because I didn’t have a choice. And also, every time I would be in a doctor’s office verbally describing that this insane thing happened to me last night and I don’t know what it means and i don’t know what’s going on -- it had no effect.
I remember, around the same time as the ER trip, being at this other doctor’s office and I said to him, “Last night I was walking to the bathroom and I collapsed on the floor and I couldn’t lift my head. I couldn’t blow air from my lungs fast enough to produce sound. I couldn’t call out to anybody.” And he’s looking at his chart and not really paying attention. And I take out my phone and I pull up this video from the previous night, and I said, “No, look. This is what happened.” And he just turned white. Suddenly everything starts escalating, and he’s saying, “Oh my god, you need a spinal tap and you need an MRI. We need to figure out what’s going on with you.”
Laura: Wait, so he actually responded to the video?
Jennifer: Yes. And it was amazing to me because all this time I thought if I just describe it well enough then they’ll listen. But people believe what they can see with their own eyes. That’s the hard thing about telling this story: so much of this happens inside of homes and bedrooms. It doesn’t happen in public spaces. It dawned on me that maybe if I could bring you inside this experience then you could understand what it’s truly like and your entire response would be different.
Laura: I think that’s why the footage is the way into the experience. How often were you filming yourself at this time? When I’m shooting, I’m religiously backing everything up and keeping a log. But I imagine you weren’t doing any of that. Were you reviewing it or just filming?
Jennifer: I didn’t watch any of the footage before I decided I was making a film, because it wasn’t really about that. I think I picked up the camera whenever I needed it, and when I needed it was in the most emotionally charged moments when I felt the most scared or the most desperate or the most confused. I didn’t know if I had a film before we went into the edit. I reviewed everyone else’s footage, but I couldn’t watch my own for a really long time -- it was just too emotional. In some ways watching other people’s footage was how I dealt with my own emotions. That was how I processed this.
For most of the production of the film… I don't’ want to say I was suicidal, because I was never depressed, but I think I always thought this could end with me taking my life. There’s a high probability that will happen. And I believed that because over the course of the production of the film, I saw so many people that I knew in the online community take their lives. It was just part of the reality of what happens.
Laura: I remember – very vividly – watching the first cut of Unrest at the Documentary Edit and Story Lab and I felt the film was working in two different ways. There was a way in which it was showing that this disease is real, and recognizing the importance of actual information because this is a disease that people have stereotyped as being in the sufferer’s head. That came through very strongly in that cut. But I felt that there was something else that was, not missing, but that wasn’t there. It was the difference between the film being about something, versus the film full embodying something.
I remember being hesitant to say that at the Lab. I had just witnessed this most raw and painful film on the screen, and here I am saying, “Can you push it a little bit further?” Can the film embody this more and show something not from the outside, but from the inside?
Jennifer: But I was so glad that you respected me enough to do that. I think everybody deserves to be pushed in their process. Plus, I felt the same thing. I hadn’t yet stepped into the film. My personality is always kind of stand by the side of the pool and dip my toe in 20 times before i just cannonball in. I think I just needed to be pushed a bit. I didn’t know how I was supposed to inhabit that space on all those levels: as a filmmaker, as a character, as a person.
Laura: It’s always hard. You can’t see that as a symptom that something is not working – the process is hard. You have to wrestle through it.
Two of my favorite shots of the film are at the end. I’ve seen many cuts, and you sent one right before it was finished when this was added. It was this moment of, “Oh my god i can’t believe you have this image…”
Jennifer: Oh, the dancing footage?
Laura: The dancing! And then you literally collapse. Omar goes from being part of this romantic dance to keeping you from falling on the ground. And we talk about how images can say things that capture the drama of the moment -- you could write a chapter and still not capture the layers of what was happening there. I’m curious how that came into the cut.
And then the other shot is the last shot in the film, which I love. You and Omar are lying in bed and you’re going into different headspaces and it’s this beautiful visual moment. Can you talk about including those shots and the overall love story piece of this film.
Jennifer: So the dancing shot is one that… I never really liked it that much. It wouldn’t have made sense anywhere else in the film except in a montage like that. On its own I thought it was a little too pretty. It actually came about because I think you were the one who said, “Those shots that are there at the end are kind of weak” [laughs]. And [co-writer and editor] Kim Roberts went and found it and put it in there and it was perfect. The very last shot I love because it’s so ambiguous: everyone has a different reaction to it. I’m pretty coy about its meaning because I like the fact that everybody has a different response to it.
I was grappling with the fact that this story doesn’t have a dramatic ending in the sense that there’s not a finality -- chronic illness is different than acute illness. With acute illness, either you find a cure and heal from it or you die from it. Chronic illness is an unknown cyclical process that may extend forever. You don’t really know what’s going to happen to all these characters -- and they don’t know. I wanted a way for the audience to feel that.