TOUCHED BY LYME: Women and Lyme disease. What’s going on?
Sini Anderson is a filmmaker and artist who directed The Punk Singer, a 2013 documentary about musician Kathleen Hanna and her experience with late-stage Lyme disease.
In the middle of making that movie, Anderson herself developed weirdly debilitating symptoms, and surprisingly, was also diagnosed with late-stage Lyme disease.
Since then, Anderson says she has met dozens of other female artists with Lyme disease. And that she’s come to see that gender inequality plays a part in how the medical establishment approaches the illness. She chose that topic for her next film, called “So Sick.”
Anderson talked about her new film in the following interview, excerpted from the online publication “Damn Joan”:
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…
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.
…I’d never been more scared in my life. I was non-functioning. 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.
...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.
Click here to read the rest of the interview.
Click below to watch an excerpt of her film. This section focuses on artist and musician Bekah Fly, who has late-stage Lyme disease. “So Sick” also raises the question of what appears to be a strong gender bias in the diagnosis of the illness.
Emails to Sini Anderson can be sent to firstname.lastname@example.org, who will forward messages to her.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at email@example.com .
- February 23, 2018 at 12:50 pm
Oh please don’t make this disease about women— this a disease affecting men, women, children, black, white, all races and age well it doesn’t matter. Love the highlight but stop with trying to label this as just women being discarded and treated poorly regarding this disease.
- March 1, 2018 at 4:27 pm
You’re right to some degree; yes it affects all types of people. Unfortunately, an incredibly disproportionate amount are women; some estimates say that over 80% of Lyme diagnoses are women. That’s not a number that can be ignored.
- February 23, 2018 at 2:50 pm
I still cannot believe the similarities in so many Lyme stories. From the feeling like a crazy hypochondriac, to being dismissed by multiple doctors, to being referred to mental health professionals, being told it’s “just stress”, ,etc.
I feel like this can’t be real life sometimes. I have always been a healthy, strong person until I wasn’t. To actually be really sick and scared enough of what was happening to me to seek medical help and be blown off repeatedly has been soul crushing.
- February 23, 2018 at 7:20 pm
This doesn’t sound like a problem unique to women. Many people are dismissed by doctors, both male and female.
- February 24, 2018 at 1:26 pm
This stuff is too late for me. Had under-treated Lyme. I can barely walk now. A LLMD told me I’d not recover unless I had stem cell therapy. I now have a GoFundMe for it because even tho I found a NIH study for it, patients have to pay $17K to be in the study.
- February 24, 2018 at 2:13 pm
Some research that has been done may shed some light on the relationship of male and female hormones and who is bitten more often. Also, both males and females in my support group have said that doctors say it is in their head.
- February 24, 2018 at 2:23 pm
My daughter [ 27] is ‘So Sick” for 20 years. Nightmare. Just no other way to say it.
- February 24, 2018 at 4:51 pm
Memory problems with Lyme disease
- February 24, 2018 at 5:35 pm
“I had a period when I couldn’t lift my arms more than six inches up in the air”
have talked to others who experienced brachial plexus issues, frozen shoulders etc-what is the link to borreliosis complex?
- February 24, 2018 at 6:29 pm
Lyme is mis-diagnosed all the time in both sexes, but now we need “gender-based studies”? I’m afraid she is a one-issue sexist. She should stick to discussing medicine here, not “female only” gender based politics.
- February 24, 2018 at 7:03 pm
Sini, I’m confused? I also had late stage Lyme. Spent time in many ER’s with the same diagnosis. Spent a week in a cardiac ward. Spent time in 3 different hospitals. Had a catheterization of my heart trying to figure out why I had arrhythemia of the heart for no apparent reason. My blood vessels were popped out on both legs. Deep vein therapist told us my “socks were to tight”. Spent 1 wk. in a lock down suicide section of a not very nice mental institution. These are only a FEW highlights of my days with Severe Lyme, prior to diagnoses & after. Surprisingly I’m a gender conforming person,male. Have seen many females in the same position as me over the past 13 yrs. .Have also witnessed their same or better treatment than what I received. Your really trying to make Lyme into a sex biased issue? Seems every individual in the country is becoming a victim, with some exceptions, white middle class males. Best regards, Russ Cording , Glenmoore, Pa
- February 25, 2018 at 8:18 am
So if your first test came back negative, get tested again?
- February 26, 2018 at 7:07 pm
I was tested 3 times by the CDC accepted test, they all came back negative. It took a functional medicine physician and a test that tested for DNA to get a Borrellia positive diagnosis. I’ve lost my job, a lot of my memory, my self respect, and it gets harder to walk every day. THE CDC ACCEPTED TEST doesn’t work as well as it should.
- March 5, 2018 at 6:25 am
So sorry to hear. I am going through this too. I am a nurse lid my job of 12 years because i was too sick. I have bed trying to find an attorney to help but no luck. I meant for disability. They said i don’t have it nowbecause i was treated with 21 days of doxycycline.
- February 25, 2018 at 8:35 am
I have had 7 cases of Lyme Disease since 1980. I have survived and been productive only by spending lots of money for alternative health care, especially nutrient IVs and lots of supplements, as well as Lyme literate doctors to provide this care. Important to find these doctors. I think the Lyme Disease. org group has such a list, which didn’t exist during my multiple cases in the past.
- February 26, 2018 at 4:07 pm
I am in total agreement with your comment. The only thing that has helped me is seeking out an LLMD and getting nutritional IVs along with supplements and herbals. I believe your immune system has to take over this beast inside your body.
- February 26, 2018 at 7:13 pm
Bright Blessings to you and I admire you for your courage!! I am trying to write a book about my experience with this horrendous disease, I hope to use your film as a resource. I am looking for credible sources for the connection between Fibromyalgia and Lyme disease. Some days I can write, and some days my mind doesn’t work very well. I am sure you can relate.
- February 27, 2018 at 7:58 am
Sini, I was a working actor/singer in NYC. One late summer, I got a flu-like illness, no one knew what I had, I was lying on my couch for weeks. Id be barely able to get to auditions, and whatever work I had…couldn’t walk much…this was in 1985-86! I gained a ton of weight, hair was falling out, killer rib pain…I could go on…this was my life until 1998, my 1st IV, (blind in one eye, with abx sight returned) and my first LLMD stopped treating LD… Everyone thinks we’re nuts, and selfish…now I have swelling in my ankles, still cant walk well….HELP!!!! there is no answer!
I’ve been to LLMDs and natural docs, all have ideas, but no cure…the best I hope for is a better functioning life…
- February 27, 2018 at 8:17 am
I don’t believe it’s a woman problem. I know alot of people. It is a problem in all people. The problem is if you don’t have a lot of money. To see doctor’s that can help you deal with it.More and more doctor’s thank your a Hypochondriac.I got my Lyme’s in 2014. Everyday I just want to lay down. I so sick of not being myself and healthy.
- March 8, 2018 at 11:02 am
I find the insinuations of this article extremely offensive. I am a male who was misdiagnosed for five years. I was brushed off, misdiagnosed, etc. Finally, after years of this, I was called by the Canadian health system to say that my tests for Lyme came back positive. This is not a gender issue at all. To insinuate such is just disgusting.
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