The Diagnosis

People say disease doesn't discriminate—but that doesn't mean all patients are equal, especially when it comes to Lyme disease. Meet artist and musician Bekah Fly, who has late-stage Lyme, in this excerpt from director Sini Anderson's forthcoming documentary, So Sick. 

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Sini Anderson has always been known for the intimacy of her work, but her forthcoming feature-length documentary, So Sick, is especially personal. Anderson, who has late-stage Lyme herself, is determined to make a statement about the gender politics surrounding Lyme. I sat down with the filmmaker—who is a friend—to talk more about the project. —Mikki Halpin, editor in chief

Mikki Halpin: This excerpt is so moving, but obviously we’re seeing only a small part of Bekah’s story. What’s she really like?

Sini Anderson: She’s a young, totally free-spirited, talented person who wants to be energized in the world. She does not want to be isolated—she wants to be making art and community with other people. And so, while we were shooting, I felt like she was really happy that we were there. She’d say, “Oh, what happened with this camera?” She wants to be engaging with other creative people because that’s who she is. But unfortunately, she’s been sick since she was 20, and now she’s 30. So the majority of her adult life, she’s been struggling with her health, and she’s gotten worse, not better. It’s rough, and at the same time, there is something about Bekah that is so magical. She has a lot of spirit, she has a lot of spirituality, she has a lot of goddess and god energy. She’s a pretty magical little person, you know? And so I have a lot of faith in her. Our interviews were full of heavy, intense questions, statements, and realities, but when you’re not in isolation with that, it makes it a lot lighter and it gives you more energy. I think by being so open in this film, she knows she’s doing a service to so many people. I know for a fact that that has kept her going in dark moments, and it’s kept me going too.

MH: Can you tell us more about the film this is excerpted from?

SA: So Sick is a documentary about women with late-stage Lyme disease and various autoimmune diseases. It’s especially personal to me, since I have late-stage Lyme myself.

MH: How did you get that diagnosis?

SA: It was a long journey. As a gender-nonconforming person, I politically identify as a woman, but I’ve never been very in touch with my body. For years, I was treating different symptoms, but I wasn’t incredibly sick. I had a period when I couldn’t lift my arms more than six inches up in the air, and then months later, it just went away. I was seeing different doctors for arthritis, but I just thought, “I guess this is what happens when you’re 39—you get arthritis in your hands and feet.” And that went away too—out of sight, out of mind. Then, as I was working on The Punk Singer [a documentary about Bikini Kill and Le Tigre frontwoman Kathleen Hanna, who was diagnosed with late-stage Lyme disease midway through production], I couldn’t stop getting respiratory infections, and my anxiety, it just felt so different. I had a general practitioner I really liked, and on the way to an appointment, I wrote everything down, and when I’d finished, I thought, “Well, I’m a hypochondriac—there you go.” It was the list of a crazy person, you know? I almost didn’t share it with her, but when I did, she said, “Sini, this sounds like Lyme disease.” I was like, “Actually, I can’t have that because the subject of the film I’ve been working on has it, and that’s too weird.” It seems like a bad senior thesis project, that I’d, like, catch my subject’s disease. But I kept getting sicker and even wound up in the emergency room. They released me with no diagnosis, with the recommendation that I see a psychiatrist.

MH: Oh my god.

SA: I’d never been more scared in my life. I was nonfunctioning. My immune system had just shut down. So I took a Lyme disease test and it came back negative, but Kathleen, the subject of my film, convinced me to see her internist. I had to sell my motorcycle to pay for the specialized blood test they recommended, because insurance wouldn’t cover it. It came back positive for Lyme, Babesia, and Bartonella, and that was kind of the beginning of my journey.

MH: Bekah says similar things in the excerpt: I felt crazy; I was told it was all in my head.

SA: I’ve talked to close to 200 women with immune diseases between the time I got diagnosed and now, and that’s not for the film—that’s the kind of service I feel I can give back to my larger feminist and queer communities. And the story you just described about feeling crazy, having doctors suggest mental health solutions when they’re not mental health experts, it’s probably the case for 90% or 95% of the women I talked to. My situation was different from Kathleen’s, just because she was seeing a different level of doctor, you know? And she had a different level of resources; by nature she wasn’t being questioned as much, I don’t think. With class comes a level of seriousness where you get the benefit of the doubt.

MH: That had to be infuriating, not being listened to.

SA: The more times I hear about women in similar situations being dismissed, the angrier I get. When I found out that chronic and late-stage Lyme disease is seen as a joke in a lot of medical communities, that made me really angry. Because the illness is so intense, you know? It really felt like my life was ending. And then I started digging into fibromyalgia and chronic fatigue, and I realized the overarching thing happening is that something’s going on with women’s immune systems, and we’re dismissing it. There’s no real treatment for late-stage Lyme, and even though rates are through the roof for women, there are no gender-based studies done with late-stage and chronic Lyme. The National Institutes of Health is the largest government-funded research health institute in the world. And once you do enough digging, you realize that it’s not that women are experiencing all these mystery illnesses—it’s that women are a mystery; our bodies are the mystery.  
 
In 1993, President Bill Clinton signed a bill called the Revitalization Act, which demanded racial and gender equality in government-funded health testing. Two years ago, Women’s Health Research at Yale released a report that showed that the National Institutes of Health has failed every year since the bill was signed in terms of matching gender inequality within testing. They’re just not doing it, and there’s no repercussions or accountability. 

MH: Wow.

SA: If you go to the website for Women’s Health Research at Yale, they have these little videos where they go around campus interviewing people, and in one, they say, “Did you know that when a new pill for female libido was introduced, it had been tested on 23 men and only two women?” And people are like, “That’s not true!” You’re laughing, but it’s true! It was tested on men to see if they keeled over, and then they released it to the market. But when you look at the video, there’s only a few hundred hits, right? And it’s because they work in statistics at this health center, and nobody’s going to look at their videos. So the best way I can think of to spread the truth is through film and storytelling. 

MH: It must be incredibly difficult to work on a documentary about an illness that affects you too.

SA: It is, but it’s also energizing. If I didn’t have the same conditions my subjects had, I don’t think I could have made this film—I would’ve lost interest or been too heartbroken or found it too intense. But I believe in my subjects, and so in a way, it gives me energy. It connects to the #MeToo movement in the sense that I’m giving a voice to anybody who’s ever been doubted by an authoritarian figure. For young women, unfortunately, it happens all the time, and has been for a really long time.

MH: It seems that for so many marginalized groups, to get health care you have to be politically active.

SA: It’s true. When every system in your body is being hit—brain, heart, every muscle, every joint—it’s really hard to be an activist. As somebody who’s always identified as an activist, I feel that making this film is effective with the amount of energy that I have. Because I’m still struggling with my health, I have to be incredibly careful with what I choose, and being angry is just not something I can invest energy in. But in the end, what’s going to make a good film isn’t me being angry—it’s me being able to get quiet enough to listen to the incredibly smart women who are working in the fields of women’s health, the immune system, statistics, and so on, and having them help me tell the truth. The level of bullshit is so high right now that we’re just not willing to let people question our truth anymore. That’s #MeToo, that’s #TimesUp, that’s “No, you don’t get to tell me I just need a psychiatrist.”

MH: It doesn’t seem like such a huge thing to ask, to be believed.

SA: Absolutely. Right now there’s this dark underbelly that’s being exposed, and women are rising together on a lot of different issues and demanding truth. There’s confidence being given to women now in a way it never has been before, and it’s helping us grapple with some incredibly hard things. It’s energy in the right direction.

MH: What can women do to demand change in the health arena?

SA: At this point, so many of us know somebody who’s struggling with chronic Lyme or chronic fatigue or fibromyalgia, and we need to get the message across that our bodies need to be studied. We shouldn’t be trying medications or treatments that have been tested only on white men. And meanwhile, Lyme disease is spreading like crazy; that has to do with climate change and the fact that those ticks no longer die off in the winter. They’re picking up new diseases, and we know very, very little about all the coinfections they’re carrying. They’ve found infected ticks in every single state, but if you walk into the emergency room right now in San Francisco and present classic Lyme disease symptoms, they’re going to tell you, “Oh, we don’t have that in California.” What’s being taught about Lyme in medical schools is so outdated. And then some people are like, “Oh, it’s the trendy thing happening in health.” Is it trendy? Or is it just that people are finally getting to the truth? I can think of a lot of other trends I’d rather be trending on than late-stage Lyme disease. It’s the most unglamorous, uncool, un-fun thing ever.

Find out more about So Sick, the movie.

Find out more about Bekah Fly and how you can help her.