Lyme Disease as a Feminist Issue

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Over here at truthout.org, there is a write-up of radio host Dennis Bernstein’s interview with filmmaker Sini Anderson.  Anderson is the former director of the National Queer Arts Festival and the director of the documentary The Punk Singer about former Bikini Kill leader Kathleen Hanna.  During the course of filming, Anderson was diagnosed with Lyme disease, which Hanna also battled.  Here is a portion of the interview:

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.

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.

Read the full interview here.

-Bridget Crawford

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