Shining LightSini Anderson is Fighting for Late-Stage Lyme Patients

Kyla Schuller and Sini Anderson wearing masks during a California wildfire (Film still from So Sick)

Sini Anderson never wanted to make a documentary about chronic illness. But when she found out she had late-stage Lyme disease while filming her critically acclaimed 2013 documentary The Punk Singer, which coincidentally examines musician Kathleen Hanna’s experience with Lyme disease, Anderson knew what the focus of her next film would be. After being diagnosed, she was shocked to find that dozens of her friends were sick with tick-borne illnesses, but they are hardly alone. The Centers for Disease Control and Prevention estimates that 30,000 Americans are diagnosed with Lyme disease every year. (Since the illness is often misdiagnosed, this number may not fully capture how many people actually have it.)

For some Lyme disease patients, the illness resolves itself with a course of antibiotics, but others live with late-stage Lyme disease, a chronic condition that can cause fatigue, pain, cognitive dysfunction, and other symptoms. Late-stage Lyme patients face a unique problem: Some doctors and medical institutions don’t believe their illness is real. Late-stage Lyme disease mostly affects women, and the sexism entrenched in Western medicine poses a barrier to researching and treating the disease. Now, Anderson is working on a documentary called So Sick, which identifies late-stage Lyme and other chronic illnesses—and the lack of attention paid to it by doctors—as a crucial feminist issue.

Anderson’s feminist, punk ethos dates back to the beginning of her creative career: She cofounded lesbian-feminist performance poetry collective Sister Spit with Michelle Tea in 1994. That same spirit informs her work as she gathers chronically ill women to speak truth to power. In this interview, Anderson tells me about her experience with Lyme disease, her memories of the AIDS Coalition to Unleash Power (ACT UP), her complicated feelings about appearing in her own film, and the projects she wants to work on next.

Why did you decide to name the documentary So Sick?

“I was so sick” or “I am so sick” were the most common things I heard in the conversations I was having, from all kinds of people suffering from different illnesses. Sometimes that’s the only thing that I can say when someone asks me how I’m doing. It’s something I’ve heard again and again, and I still hear it.

When did you realize that you wanted to make a movie about women with Lyme disease?

When I was shooting The Punk Singer, I was like, Fuck, this is going to have to be the next thing that I look at. But it really wasn’t what I wanted to do. I wanted to do something lighter and more fun. I knew that I wanted to make the film, but I just couldn’t start. I was living in Los Angeles [in 2013, when] I got a phone call about a queer writer acquaintance who was really sick with late-stage Lyme and ended her life. I put the phone down. I threw up, and I felt equal parts horrified and relieved for her. I think that pushed me to say it’s a hard subject, but I should just do it. That was the kick in the ass that got me started.

What “lighter films” would you have worked on if you hadn’t started producing So Sick? What might come after it?

There are two autobiographical documentaries I want to make about Sinead O’Connor and Yoko Ono. They’re women whose stories haven’t been confirmed by them in an adequate way and their work is so inspiring, so I thought it would be more along the lines of examining another feminist artist’s work and bringing their story forward. I am doing that [with So Sick], but it’s not just one artist’s work. It’s easier to be a bit more stoked about taking a look at one of your heroes and their art. It’s a bit harder when you’re so close to the subject or when you, as it turns out, are part of the subject.

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How did you decide which women artists to interview for this film?

The decisions I’ve made in this project have everything to do with my own art, and my extended feminist art community. It’s strange that I know so many feminist artists with late-stage Lyme and other tick-borne illnesses. All these women are under 40 [and] really productive, brilliant artists. I’m not willing to let them disappear without putting up a fight, without shining a light on them. Those are my politics, and that’s the arts community that I come from.

I was around for ACT UP. I was going to demonstrations. I was losing friends. It was a complete panic. Part of what made it possible to bear losing that amount of friendship and creativity and brilliance was the community coming together. I’m looking at people in my community with autoimmune illnesses, late-stage Lyme, tick-borne illnesses, and chronic conditions that aren’t getting better, and I’m not cool with them going down without a fight. I’m not cool going down without fighting. It’s not okay. We’re too young to be this ill, and there are too many unanswered questions. I’m excited about speaking to subjects who are suffering from autoimmune illnesses and chronic fatigue, looking to each other, and opening our focus to say what we have in common. I talked a lot with Jennifer Brea before [her documentary about chronic ilness], Unrest, came out.

There’s a fear that it’s too meta—that the sick-chick film has already been made this year. I wanted to talk to Brea to make the political point that society doesn’t get to say, “You already got your story this year.” That’s incredibly sexist. Too many people are struggling. Brea and I are in a thread of feminist artists working in different media who are all dealing with chronic illness and at various stages of completion with their projects, and we’re all in contact, like, “How can I help you?” It’s amazing because we don’t have any feelings of scarcity, it’s not like, Oh shoot, that person’s writing a book about chronic fatigue as well. There needs to be as many stories as we can handle.

Where are you in the production process for So Sick?

I’m plugging along. This summer I followed Porochista Khakpour on her tour for her new book, Sick: A Memoir.  It’s amazing and also terrifying to see where [the film’s subjects] are at personally with their health. One subject had to flee New York because of mold sensitivity, so she’s in the desert of California around Joshua Tree with her boyfriend and is kind of getting worse and worse. She doesn’t have much of a plan. She doesn’t know what to do. When they go to the grocery store to get supplies, she has to put on a gas mask. So, there’s people I need to catch up with, and there’s people who I haven’t interviewed yet.

My subjects do video journals and upload them, and this is how I stay caught up on what’s going on with their health, their personal life, and their art. And it’s totally a godsend because I haven’t had the money to show up in person and interview them, but I know where they’re at because they’re uploading all these video journals.

I really wanted to finish the film quickly—this is a story that needs to get out there quickly—and because of financial constraints I haven’t been able to do that. But I’m grateful for that in a sense because now I don’t have as narrow of a focus. The topic is no longer exclusively late-stage Lyme. Now I’m looking at women in my community who not only have late-stage Lyme and coinfections, but also autoimmune issues, chronic fatigue, and fibromyalgia. I want to take a look at that on a wider level and approach it through a lens of what we know about women’s health in general, which is not very much.

Sini Anderson (Photo courtesy of Sini Anderson)

Why have you encouraged your subjects to record video diaries?

One of my first interview subjects was really nervous. Something happens when you get in a room and you have a couple of lights and a camera person. People get nervous, and so you start to lose a little bit of the intimacy that really holds this genre of film. Several of my subjects have either come very close to losing everything, including their lives, or been taken out of their lives for an extended period of time. Some don’t even know if they have a future or how they’re gonna take care of themselves. I can’t think of anything more vulnerable than being in this unpredictable, unseen tragic place where you don’t know what’s gonna happen to you and you have an illness that most people don’t understand.

It makes sense that when you start answering questions about that, you kind of have to hold it together. One of the things that’s really kept me going is seeing other sick women not keeping it together completely. Seeing their honesty about where they’re at and being able to articulate that and then fall apart and then potentially be in a completely different place the next day is the kind of thing that gives me fuel.

When you’re directing, [sometimes] the subject feels like they have to fill up the space and talk continuously; they don’t feel free to slow down and think about what they want to say, or if they want to say anything. When I got these video journals back, there were moments where the subjects were saying nothing or they would just exhale and there would be 20 minutes of silence. That was the most emotional thing to me—just watching them process their thoughts. It’s so moving to just sit with somebody.

I’ve thinking about Alison Kafer’s definition of crip time in relation to your work. Here’s the definition: “Crip time is flex time not just expanded but exploded; it requires reimagining our notions of what can and should happen in time, or recognizing how expectations of ‘how long things take’ are based on very particular minds and bodies. Rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds.”

That’s really useful to hear. One of the first thoughts that comes up in hearing that is kind of a self-compassion. It’s okay to not have the same standards as I did 10 years ago. I’m also partly making this project for my own survival. Generally, a lot of art gets made from the place of needing to know that I’m okay, so I’m gonna make this piece and find other people who are going through this thing. I wanted to tell these stories and ask larger questions about society and healthcare and how it approaches women in general to find things that are reminders that other people are going through this and there are a lot of creative ways to deal with it. I’m in a lot of pain, and I’m starting to suffer from exhaustion, and the first thing that goes through my head is, Why am I so lazy?

From left to right: Sini Anderson and Kyla Schuller (Photo credit: Sini Anderson)

I also have chronic illness and I don’t always do things at the same speed as others. Are you inspired by other chronic-illness activists?

It’s been very difficult for me to seek out activism related to my limitations and health crises because I’ve had a very hard time accepting [my illness]. My fear is that if I accept it and own it completely, it will be confirmation that I’m not gonna get better. I’m using art and creativity to figure out how I can accept it and how I can learn from other people dealing with it, and it’s a lot easier for me to be really pissed off at the National Institutes of Health, the lack of science, and the lack of attention that my subjects are getting, than it is for me to think about the lack of attention I’m getting. I have this constant self-doubt around my illness.

Why do you consider chronic illness a feminist issue?

After finishing The Punk Singer several years back, I did this [radio] interview with KPFA talking about Lyme as a feminist issue. The messages that I got for putting those two together was a little out of control. People were very pissed that I was talking about late-stage Lyme disease, which is different than Lyme disease. And it is a feminist issue because between 85 and 90 percent of the people who can’t get well and stay well are women. So for people to be pissed off that I’m not addressing everyone in that moment is a little embarrassing and horrifying. It’s kind of like the blue lives matter movement. I can’t understand how somebody could co-opt the Black Lives Matter movement and say that cops matter too. What the fuck does that have to do with anything other than your own total panic that you’re not being seen?

Women aren’t being looked at. They haven’t been looked at, and once we started digging into the research, the realizations were shocking to me. It was shocking to find out that a woman’s immune system is completely different than a man’s is, and we’re not studying the difference. We’re not looking at half of the population; we’re selling them medications that are for a different population; and then we’re saying, if you can’t get better on this, I don’t know what to tell you. There’s a lot of really smart people out there calling it out, and I’m so excited to talk to them. They’re badass women, and when they call out this kind of sexism and criminality within healthcare they’ve gotten death threats. It’s intense.

Why do you think so many doctors don’t acknowledge late-stage Lyme disease as a real illness?

Holy shit, I really can’t figure it out. We have guides from the Infectious Diseases Society of America, the Centers for Disease Control and Prevention, and the [National Institutes of Health] saying people with late-stage Lyme don’t have a persistent infection and that it’s all psychological. And that’s an infuriating thing to hear when you’re really sick. I don’t believe it. It wasn’t the case for me or for many other people I know.

Why did you decide to include yourself in So Sick?

There’s a few things: I hate the way I look and sound. I never complete a sentence. I’m under some kind of illusion that I’m a much better-looking person than I actually am. So it’s very humbling. And there’s another thing, artistically: Directors that put themselves in their own documentaries are hardly ever taken seriously as filmmakers—big documentary no-no. It’s embarrassing.

So I didn’t want to put my own story in this [documentary]. I still don’t, but if my story works in service to the overall story, and if I approach this project in the way I’ve approached all the other art I’ve ever made, it makes sense to put myself in this. My filmmaking is much more experimental than traditional filmmaking, and it’s my activism to challenge the norm of artistic forms, to say, “I didn’t go to your school, so you don’t get to tell me how to write, you don’t get to tell me that that kind of art doesn’t get mixed with this kind of art.” It’s about vulnerability and honesty for me.

This conversation has been edited for length and clarity.

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Amy Berkowitz is a writer living in San Francisco. Her first book, Tender Points (Timeless, Infinite Light, 2015), is a longform lyric essay about chronic pain and trauma. Her writing on chronic illness, sexism in medicine, rape culture, and other topics has been published in McSweeney’s, Ladygunn, and Wolfman New Life Quarterly. She’s currently working on a novel (and a short talk about oranges). More at amyberko.com.