Is Lyme disease becoming a major issue for women worldwide? Sini Anderson, former director of the National Queer Arts Festival and director of the documentary The Punk Singer about feminist icon Kathleen Hanna, thinks so, and she's busy interviewing dozens of women for a new documentary to prove her point. Anderson's film about Hanna reveals Hanna's life-threatening experience with Lyme disease. While filming the documentary, Sini Anderson was also diagnosed with Lyme disease and began her own multi-year struggle for a diagnosis and treatment. She then began noticing just how many women have Lyme disease, and in particular, that a large percentage of women in the feminist community she is part of have "neurological Lyme disease," and are extremely ill.
Dennis J. Bernstein spoke with Sini Anderson about her film on Hanna, as well as what she has discovered more recently as she continues to interview dozens of terribly ill women for her upcoming documentary about Lyme disease.
Dennis Berstein: Well, Sini Anderson, it's really good of you to take some time out to speak to us about this very important issue.
Sini Anderson: Thanks Dennis. I'm happy to be here talking about it.
Alright, well let's start with your film about Kathleen Hanna called The Punk Singer. First of all, I think it would be great if you make sure everybody knows something about who Kathleen Hanna is.
Sure. Kathleen Hanna is a feminist, artist, musician who is largely credited for the beginnings of third wave feminism, a movement that really started to pick up speed in the early 1990s. She was a lead singer of a band called Bikini Kill, and then went on to another band called Le Tigre. And she is an amazing artist and activist, as well as a musician.
Alright, and talk a little bit about why you got involved with doing the film and how, in the midst of it, it was revealed that Kathleen Hanna was diagnosed with Lyme. How did that happen?
Sure. Well, you know, the idea for the documentary kind of came about when Kathleen had come to me. We'd just been working on a documentary about her band, Le Tigre. It was actually more of a tour film, at that time.
And Kathleen had not been performing at that point, for several years. She'd pretty abruptly left the music scene, and had never really, publicly, talked about why. So Kathleen was actually extremely sick, and didn't have a diagnosis and didn't know what was wrong with her.
In fact, when I did get sick and found out that I had Lyme disease, I was like, this sounds like a bad senior thesis film. Like I can't have this thing that my friend has and I'm making a documentary about.
But [after] a few years, after taking a break from Le Tigre they wanted to put out - her and her bandmates - wanted to put out, "Who Took the Bomp?" - the Le Tigre documentary. I suggested to her, at that point, that I thought it was a really, really good time for her to tell her personal story. I also should mention that Kathleen is a good friend of mine and so there were a bunch of us that were very concerned about her health. Kathleen didn't know what was going on and, you know, to be quite frank, she didn't know if she was going . . . if she was gonna live.
She'd been getting really, really sick, and nobody could figure it out. So, not only were her friends worried, but also her husband, and she was really worried, and we thought this is a really good time to preserve her legacy, and for her to tell her personal story. About six months into the filming, she was finally diagnosed.
And how did that come up? So it came up in the middle of the film? She had been very sick . . . you started filming and then she finally got a diagnosis?
Correct. Half way through production.
And what was your reaction to the Lyme diagnosis? How did you respond to that?
Well, I think that I was really relieved. You know, I was really, really relieved. I thought, "Oh, my God, this is it. The diagnosis is Lyme disease . . . that's something you get from a tick. Like, no big deal." I mean I was actually pretty shocked that it was a diagnosis that I thought, at the time, was something that was so manageable and really couldn't be all that awful. So, it was confusing and relieving at the same time.
Well, now then there's a real turn of events. Tell us about the really strange coincidence about how you got diagnosed with Lyme disease, I guess, shortly after she did. Had you been sick for a while? Did you just suddenly get the symptoms?
Yeah, well, I mean this is just like a crazy . . . this is like a crazy story. In fact, when I did get sick and found out that I had Lyme disease, I was like, this sounds like a bad senior thesis film. Like I can't have this thing that my friend has and I'm making a documentary about.
I was really, really scared at that point because I had seen a lot of doctors in the hospital, and I was getting worse by the minute and they're telling me that "actually there's nothing wrong with you; you're fine."
What had happened for me is I had all kinds of strange symptoms for five years prior to that. But they had been coming and going. And when they would go, I would kind of have . . . took the attitude: out of sight, out of mind. And I'm kind of a workaholic; I just, kind of pushed my way through it. And earlier on, I thought some of these symptoms were just like due to aging, or stress, or, you know. And I was pretty much in denial about them. I wasn't, to be honest, too concerned with my health. I would just push through - you know - eat healthier, go to the gym more.
When I became extremely sick in the filming of The Punk Singer, I mean, Lyme disease was the last thing that crossed my mind. And, what happened for me was Kathleen was diagnosed, and about two months later, I ended up in the emergency room. We weren't sure if I was having a heart attack and I had been in contact with my doctor and had my sixth upper-respiratory infection of the year. I thought I was having the flu again, for the fourth time in the year, outside of flu season.
My doctor heard my symptoms; they just very suddenly got extremely bad and multiple symptoms came on - and my doctor sent me to the emergency room because we weren't sure if it was a heart attack; I didn't know if I was having a stroke . . . my speech was slurred. You know, I just knew something was really, really wrong. So I got in a cab, went to the emergency room and spent a few days there, without knowing what was really wrong.
Did you come out of the hospital, with a diagnosis?
No, not at all. I left the hospital, and, you know, it seemed like minute by minute, I was getting worse, and they ran a whole slew of tests there. My partner and myself were completely baffled. We had no idea what was going on with me. I was released from the hospital and I was told, you know, I was kept for observation, to take a look at my heart, and I was released and I didn't have a diagnosis. What I was told is, "There is nothing wrong with you. You are totally fine." And, I was really, really scared at that point because I had seen a lot of doctors in the hospital, and I was getting worse by the minute and they're telling me that "actually there's nothing wrong with you; you're fine."
I guess in a way, that is the terrible seed that drove you forth . . . not only to find out what was wrong with you, but to consider this in the context, of perhaps, a woman's issue because there is this historical pattern of sick women being accused of having a bit of hysteria. I mean, you also, probably had a few doubts, I understand about maybe whether Kathleen was really sick or just . . .
Right. Well, you know the ironic part about this is that, I feel like we are so deeply ingrained in our society, especially geared towards women, to tell them that, you know, they may be exaggerating a little bit, or that . . . it's really not that bad, you're being hysterical. And, I have to tell you, as a feminist activist, I was kind of shocked at my own reaction. I mean, it wasn't that I thought that Kathleen was being hysterical, but I just thought, "Oh wow, that can't be that big of a deal." You know, and I was just really ignorant about the issue.
So it was really, really ironic when two months later, after her diagnosis, I was completely leveled. I was completely flattened to the point where I was trying to write a check for a utility bill one day, and I spent about an hour trying to write a check. And I am a highly productive, hard working person. I just couldn't figure it out. It was the scariest, most terrifying feeling in the world.
So, yeah, when I first heard that Kathleen's diagnosis was Lyme disease I did kind of have a . . . "What?" . . . really? . . . like that can't be that big of a deal." Two months later I was completely flattened, and I spent months getting worse and worse. And, in that whole panic cycle, that so many people find themselves in . . . not being able to get an answer.
This is a huge thing in terms of Lyme disease and this epidemic and that some are calling now a pandemic. Talk about the multiple struggles; how did you find out what was going on?
My doctor . . . I should say my nurse practitioner, was the one who really did the most research for me. And she's incredibly compassionate and amazing, and I felt very lucky to have her. She'd been seeing me for five years, so she had been going through my records. She suggested to me a couple of weeks after getting out of the hospital . . . actually the week before I went into the hospital, she suggested that it sounded like Lyme disease. To which I said "Dr. Kate, it can't be true because, you know, I'm making this documentary, one of my close friends . . . she has Lyme disease. I can't have my friend's disease. It's just another upper-respiratory infection."
I was sent to specialist, after specialist, after specialist who couldn't find anything wrong with me. And the nurse practitioner continued to say, "I think you need to look further into Lyme disease."
Over the next couple of weeks, she kept asking, and raising the question. We did the general tests that the insurance companies paid for, which are just the generalized tests that we have. The results came back negative. I was then sent to a neurologist because my speech and my motor skills were failing. I was sent to specialist, after specialist, after specialist who couldn't find anything wrong with me. And the nurse practitioner continued to say, "I think you need to look further into Lyme disease."
I finally was diagnosed after I saw a doctor that I really couldn't afford. And this is what kept me from seeing the doctor, was finances. I saw a doctor who suggested that I pay for a more specialized test, something that the insurance companies don't cover. And this test is called the Western Blot. And you can send it out to a specialty lab that really does a thorough read-up of blood. When the results came back from that lab to the private doctor that I was seeing, I was given the diagnosis of late-stage Lyme disease and started the treatment from there.
What was the treatment like? It must have created financial hardships. You know, most of the Lyme folks that I talk to now and that I have heard from . . . you know we're a public radio station, they'd love to support us, but everybody's broke. And everybody is . . . because of the nature of the disease and the way in which the, sort of the medical institutions won't recognize it in a way that people can get and have their coverage take care of it. This is a big problem, right?
It's a huge problem. You know, I mean, this is a disease that affects so many people but this is a treatment of privilege. So, if . . . a lot of the treatments that those of us with Lyme disease know that we need, and the treatments that have gotten us better cost a lot of money, are not covered by insurance companies. And, yeah, it's a huge issue. It's mind-blowing to me how this has been completely swept under the rug and ignored. And I'm sure that you've talked about this on your show before; the main problem that I'm seeing right now is that we are not acknowledging what happens to people with Lyme disease and co-infections that don't catch that early diagnosis.
So, we're saying essentially in the medical community that late-stage Lyme disease doesn't exist. Nobody is saying, "What happens to it if you don't catch it?" So we're missing this huge chunk of important time and important information. So we're being told, "If you catch it, yeah, take the six weeks of antibiotics, and you should be fine." But nobody is talking about what happens if you don't catch it, six years down the road.
When the floodgates open like that, you get so sick, so fast - and it's so complex at that point. You really have to go to a Lyme literate doctor at that point. And insurance companies do not want to cover patients that want to go to a Lyme literate doctor.
And then six years down the road what happened with me is that my immune system finally got low enough; I finally got worn down enough from work; the flood gates just opened. Now when you get to that place, and you've been carrying the infection but it's just been laying dormant in your body, or it's been flaring a little bit, but then correcting itself and kind of going under control. When the floodgates open like that, you get so sick, so fast - and it's so complex at that point. You know, you really have to go to a Lyme literate doctor, at that point.
And insurance companies do not want to cover patients that want to go to a Lyme literate doctor. And this is big, big business. It's going to cost . . . when the truth comes out about what the treatment is . . . what's needed for the treatment of late-stage Lyme disease and the co-infections, it's going to cost insurance companies a lot of money that they don't want to pay.
Wow. How are you doing?
You know, I was in remission for about a year. And I was doing really, really well. I ended up having to . . . after a year of oral antibiotic treatment, I ended up having to get a PICC line put into my arm so that I could receive high doses of intravenous antibiotic treatments. And it was after several months of that treatment that finally got me well. I'm, you know, I know that if I didn't have that treatment, I would still be sick. I would still be sick today. You know, I'm doing fairly well.
I have to keep a really close watch on my health, and now my immune system. I'm lucky enough that I get some signs that are real telltale signs for me. Yeah, I get a large, red rash across the top of my lip. My eyes, the focus in my eyes will start to drift a little bit, and I may get a rash across my neck. So when these things start to come on, I know that it's time to do as much as I possibly can . . . really, really watch my diet, and take plenty of herbs. And just really handle myself with kid gloves. So I can tell when it's coming on. So although I'm in remission right now, it does flare a little bit; I feel pretty lucky.
Lucky, huh? Well, I've heard a lot, from a lot of people. It doesn't sound like you're all that lucky, but maybe what is lucky is that you are a very skillful filmmaker, and I think you are now turning your attention to a new documentary about feminists with neurological Lyme disease. You want to talk about what drove you in that direction. I mean, I think we have a sense of it, but you want to talk a little bit more about that?
Yeah, absolutely. Well, you know, the documentary that I made, The Punk Singer, took me about three years to make. And in the making of that film, between Kathleen and myself, by the time we finished that film between the two of us, we knew and had heard of and been contacted by 17 other feminist artists with late-stage Lyme disease. So that was pretty mind-blowing. And, yes, we're all a part of a larger community, but there are some of us who are professors, some living on the East Coast, some living on the West Coast, some living in the Midwest. It's not like this type of a friend that just lives in the same city and sees each other. We're talking about a pretty wide activist artist and academic community of feminist artists that spreads all across the country.
By the time we finished the film, we knew 17 other artists with late-stage Lyme disease who all happened to be women.
By the time we finished the film, we knew 17 other artists with late-stage Lyme disease who all happened to be women. And you know these emails were coming through, or phone calls were being made, that were like, "Oh, Sini, you know so and so, right? You remember her from this event or this type of work that she did. She's really, really sick right now; she doesn't know what's going on. They think it's Lyme disease." And these phone calls and these emails just keep coming in. At this point I'm up to about 30 women that happen to be feminist artists with late-stage Lyme disease right now, all scrambling; all feel like they're sinking. Most of them don't have the money for the treatment that they need.
And so, although I really wanted my next project to be something that was a little bit lighter and kind of fun, I see what is put in front of me right now. And I feel like, you know, the best opportunity that I have to be of service to my community and to anybody who is suffering from this disease is to tell the story, you know, to try and tell some of these stories. So I'm working with a friend of mine who also has late-stage Lyme disease named Kiyoko. The two of us are working on a documentary right now called So Sick. And we're about a quarter of the way through production at this point. And I am profiling women with late-stage Lyme disease. It is a feminist issue to me.
As you know, we've been doing this series on Lyme disease. We interviewed recently Dr. Richard Horowitz. We asked him why there seems to be a larger percentage of women with Lyme disease. He was explaining to us that Lyme can cause an autoimmune-type reaction and studies found that greater percentages of women have other autoimmune diseases, which seems to be related to hormonal reactions that can accelerate the autoimmune process. What are your thoughts about why so many women are being hit with such a crippling disease? Any thoughts on that?
Sure Dennis. I mean I think that we're talking about a few different issues here. And Dr. Horowitz is one of my doctors. Another doctor of mine is Dr. Leo Galland who is in New York City. The two of them collaborated together to get me to a place of better health and I'm immensely grateful to both of them.
Women are going to their doctors and are presenting with these symptoms and they are being brushed off by their doctors in a way that I don't think men are experiencing at the same rates.
I think that the amount of women that are being diagnosed with late-stage Lyme disease is . . . it's infuriating. And I think that what is happening is that women are going to their doctors and are presenting with these symptoms and they are being brushed off by their doctors in a way that I don't think men are experiencing at the same rates. So what ends up happening is they just say, "Oh, yeah, I must be making this up" or "I must be making this worse than it is. And I should suck it up." And then they go a few more months and then something else happens. And, you know, often times by the time they end up getting so incredibly sick that their systems can't take it anymore, we're talking 10 years down the line, 15 years down the line. And they're so sick at that point that it's really hard to get them well.
As far as like the hormonal stuff and the autoimmune responses, yeah definitely. I mean, I'm not a scientist; I am just shocked at the lack of knowledge that we have around this. And I'm not entirely convinced that this is the only thing that we're dealing with. I don't know what to put behind that statement, but there is something very, very, very complex going on with peoples' immune systems right now. I have Lyme disease, Babesia and Bartonella. And with whatever else is going on in my system, it is . . . it had created a crippling response where I was taken out so quickly.
And it's completely terrifying, you know. I don't know what's going on. I cannot believe that we don't know more about it. And I think it's going to take a lot of enraged people in order to get to the bottom of this. And there are a lot of parallels between what's going on right now and what was happening with the AIDS epidemic in the late '80s. And I think that, as time goes on, more is going to be revealed. And I think there's going to be a lot of people, especially from the CDC [Centers for Disease Control and Prevention] and the IDSA, which is the Infectious Diseases Society of America.
They're going to have to be giving us some answers that they haven't been forthcoming about up until now. I mean really the key part is, we're ignoring the answer to the question, which is, "What happens if you don't catch it?" How are a bunch of doctors telling people that, you get it, you take six weeks; you should be good on antibiotics; you'll be fine. We're ignoring everybody who doesn't catch it. And are we just made to believe that it should just disappear? Or that six years down the line, we should take six weeks of antibiotics, and it's going to disappear? That's ridiculous.
So, you know, for me, I'm a feminist activist; I'm a part of this community. I am also a queer activist and I come from activism roots. And we have got to make noise. I lost many friends to HIV and AIDS in the '90s and I watched as we struggled to fight the CDC and to fight the American Medical Association and demand answers, and demand treatment. But this is a little bit different. This is much quieter and people are so, so sick. Unfortunately the people that really are infuriated and wanting to protest are the ones that are sick and they are unable to get out there and have their voices heard.
In terms of the impact specifically on women, women have always had a problem having issues dealt with that are specific or more impactful of women. Do you think that's at play here?
You know I do. I absolutely do. I mean there are complexities when it comes to women's health, especially when you're talking about a disease that can also greatly affect your mental health. So definitely in my case there was a specific depression and an anxiety that went along with my late-stage Lyme disease. I think as soon as you, if you're a woman and you admit anxiety or depression, you just, you know, it's really easy for doctors to just put you off in another category as somebody who could use a little bit of therapy. And you know what? Quite honestly couldn't we all use a little bit of therapy?
But, we're not . . . we have to think about what doctors we're talking to, what symptoms we're presenting to them, because we can't be brushed off into a corner just saying, "Okay, this is somebody who is just sad." It's like, "no, I'm not sad. I'm telling you that I'm having problems with my speech. I'm having a great amount of pain. I can't think clearly anymore," and that "yes, there's depression that comes along with that and there's specific Lyme anxiety, that isn't your run-of-the-mill general anxiety." It's complex. And I think that it's just been really easy to kind of push women to the side.
There are people who are doing Indiegogo campaigns so that they can save their own lives, so that they can afford treatments.
And my suspicion is that when a man walks into a doctor and says, "Look, I'm not functioning. This is my very high level job; this is what I do for a living; this is my family; these are my responsibilities; something is wrong." That they are taken more at face value for that. And that's, you know, that's just the society that we live in, you know. And, so I feel like my hope is that in making the documentary that I'm going to make right now, it inspires women to stand up when they're having a health problem, if they believe that they have Lyme disease and one of these co-infections to not take no for an answer. To not say . . . you cannot tell me that there's no treatment here; you cannot tell me that there's nothing wrong. It's just, you know, we've really, really got to get together and support women who are having these symptoms early on to say, "Actually, you're not going to walk away from these doctors until you get an answer."
And I was given advice early on when I was really sick by another feminist artist friend of mine who just said, "Don't let it go. You're just going to get sicker." And, you know, I wish I would of pushed a little bit harder. I feel like I did get really lucky, and you know, earlier when you said "Yeah, it doesn't sound so lucky . . ." I want to say that I'm incredibly lucky for the community of people that I have that have stood behind me. And I'm . . . you know, it was a community effort that got me into treatment. There are people who are doing Indiegogo campaigns so that they can save their own lives, so that they can afford treatments. And once we're getting to that state where we need to do crowdfunding for our own health, I think we're in a really, really messed up spot.
After being sick for a long time, it gets harder and harder to care about advocating for yourself.
Again, I'm going to push this as a woman's issue because I see it affecting women, some of the statistics are, with late-stage neurological Lyme disease and complications of late-stage Lyme disease, that the percentages are as high as 70 percent women to 30 percent male. And we need more research going on about this. There was one study that wasn't taken any further, the funding was cut off, that had to do with . . . the testing that we have and was it possible that women biologically tested lower on these standardized tests than men do. So, we don't know enough information.
You know, if you are a woman and you're out there and you're struggling with your health, you have to keep showing up for yourself as if you're showing up for somebody that you really, really care about. Because I've got to tell you after being sick for a long time, it gets harder and harder to care about advocating for yourself. It becomes really, really difficult. And what ends up happening is, because it's such an isolating disease, quite often our own families don't even understand it. Finding support out there and pushing until you get an answer. There is no reason that we should be walking around so sick, knowing in our guts that something is wrong, and being told that there is nothing wrong with us. It's a crime; it should be a crime.
Dr. Jessica Bernstein contributed to this article/interview.