Sick and Tender: Sini Anderson and Amy Berkowitz in Conversation -- Transcript

An image of filmmaker Sini Anderson in front of a poster for her film, The Punk Singer.
A color photo of Amy Berkowitz, who is smiling and seated outdoors in front of a colorful house and plants

February 24, 2020

Moderated by Emily Lim Rogers (NYU Center for Disability Studies, PhD Candidate NYU Social & Cultural Analysis)

Amy Berkowitz:  I am going to start things off by reading a bit, the beginning of the afterword, to the new 2019 edition to Tender Points, and then I will read from the book.

When I started writing Tender Points in 2013, my experience of pain was a lonely one. Friends and partners did their best to understand, but I didn’t know anyone else living with chronic pain.  I was isolated from other chronically ill people and survivors of assault, so my pain and my assault felt like personal problems I needed to sort out. That is why I started writing the book. 

What I didn’t know when I started writing—what I didn’t know I could even hope for—was that the process of researching, writing, and reading from Tender Points would eventually connect me to other sick people and survivors and introduce me to sick and disabled communities. 

In researching my book, I encountered voices that made me feel less alone. Carolyn Lazard’s essay “How to Be a Person in the Age of Autoimmunity” was the first time I saw a writer draw connections between chronic illness and capitalism, and the first time I saw a writer describe doctors’ failure to understand and treat their illness.  In The Punk Singer, I encountered Kathleen Hanna’s anger and vulnerability around Lyme disease.

I remember reading from my manuscript at the Long Haul in Berkeley.  After the reading, an audience member asked if they could give me a hug.  “I’ve never met anyone else with fibromyalgia before,” they explained.  And then I realized: neither had I.  Writing a book about fibromyalgia had led me to making a friend with fibromyalgia. I was starting to feel less alone in my pain.

I will read from the beginning, and offer a content warning.  I will not read anything about sexual violence tonight, but the book does touch on it.  It could come up when we talk about it.

“Drug Approved. Is Disease Real?”

This was the title about a New York Times article about fibromyalgia, published the year I was diagnosed. 

Working hurt.  The precise mousing of data entry made my shoulders go numb, my wrists tingle and go numb, and sitting at the keyboard made my shoulder muscles spasm.  On the worst days, it spread to my hips and legs.  The doctor in Fort Greene wrote a letter recommending a two-week rest period.

I faxed the letter to the HR department of the world’s largest research company.  I called and emailed and they didn’t answer.  I left messages that they didn’t return.  I applied for short-term disability and my claim was rejected twice.   

When the two weeks was over, I didn’t feel any better.  The doctor recommended another week of rest.  I faxed, e‑mailed, and called HR.  I was met with the same radio silence that was starting to sound an awful lot like a static crackle, softly whispering you lazy cunt we don’t believe you’re sick, trying to trick us you worthless piece of shit.

Coincidentally, I came back the same day that another analyst came back.  He had broken his ankle snowboarding, and he was wearing a boot.  His cubicle was decorated with get well soon cards, and an Edible Arrangement bloomed festive pineapple chunks next to his monitor.

My cube was as bare as I left it.  A get well soon card would have acknowledged my illness, but as far as the world’s largest market research company was concerned, I was faking it. 

Picturing my cubicle next to my coworker’s is a perfect illustration of Morris’s differentiation between male and female pain. 

In The Culture of Pain, he writes: “Female pain is regularly disregarded, discounted, and dismissed, largely because it does not always conform to the clear organic model of a broken arm or appendicitis. 

As I read more about the history of invisible illness, I’m surprised and amused to diagnose myself with hysteria. 

They are just nasty fat woman who want to collect disability checks.  “Doing stuff makes me tired, give me some money and/or drugs.”  Lazy-ass slugs who sit at home and watch Judge Judy while the rest of the world works for a living.  71% of them are fat women who don’t get off their ass.  Sorry if you don’t like facts.

Anyone who can read an Internet article and say “Ow!” 11 times could have it. 

Fibromyalgia is largely defined by a lack of visible symptoms or identifying lab tests. The only diagnostic criteria are the frustratingly vague tender points. Press here and I’ll tell you if it hurts. Now press here. Now press here.

All I have to do is tell you. All you have to do is believe what I tell you.

Emily Lim Rogers:  I am so glad you read that passage.  It brings up a lot about the nature of the problem that people have with many invisible, chronic illnesses that are defined by the fact that they don’t get better—but people also “don’t die from them.”  Your colleague, with the skiing accident, with the boot, is visibly marked as temporarily disabled, a distinction [disability studies scholar] Tobin Siebers discusses in “Disability As Masquerade.”  What the boot does is make it is clear that he is injured, but also clear that he is going to get better.  We don’t like sick people when we don’t know if they are going to get better. In the model posited by the sociologist Talcott Parsons, we say: you have a right to not go to work, but you have a responsibility to get better.  But what happens when the avenues for getting better are constrained, or take you through wild goose chases of endless supplements and doctors that are very expensive and inaccessible to a lot of folks?  Meanwhile, what Sini will talk about is about the late stage Lyme epidemic.  Lyme disease is a disease that we understand as acute, and we know that it is tick-borne, but what frustrates people with late stage Lyme is that it does not get better.

So, my question to kick us off is: How do each of you approach the question of invisible illness, and do you see your creative efforts as part of making invisible illness visible?  Is it the visible/invisible framework we need to think about, or is it a broader reframing that you want to achieve about how we view health and illness and prognosis, etc.?

AB:  One thing I want to do, writing Tender Points, was to resist the impulse to give it a happy ending.  On the last page of the book, I am on hold with Blue Cross Blue Shield and I am in pain.  It doesn’t have an arc; it is just a slog.  I think making art and making a film about chronic illness makes it visible.  But part of me is also like, maybe it doesn’t need to be visible for people to believe in it.

Sini Anderson:  That is a wide and complex question.  We are talking about so many different conditions. A lot of what I am going to be saying is speaking from personal experience. I have late stage Lyme disease and—as Emily mentioned—there are not a ton of problems with Lyme disease in its acute stage.  Everybody knows that ticks are real, that people getting bit is real.  But there is a ton of misinformation online about it, and what’s being taught in medical schools about it.

Then we start to get to places where there are patients who are not getting well, which is as many as 30 percent of the patients who are treated for Lyme disease, they don’t recover with the standard that the CDC recommends.  And then there is the middle group of people, who never got the diagnosis, but they have been sick for years. And then they finally figure out what it is—say, 10 years later.  And the recommendations for treatments don’t differ from that of somebody who is bit yesterday.  Most people know that is pretty ridiculous. Government agencies and healthcare in general don’t like to talk about that middle group. But that middle group is so many people. They have already been denied their experience for however long they have been sick.

The cruel irony is that once they finally figure out what it is, they are the butt of the joke to the medical community.  That is motherfucking infuriating to me. It is complicated. I think it is different for everybody and it is different for each condition.  I don’t know what it is going to look like in a few years.  I don’t know what it is going to look like after I am done making this film, as far as the activist community and what people are going to want to be visible or not visible. That is up to the masses.  Right now, I am after the truth, and once I feel like So Sick can put that in a narrative line, it will make more sense to me—personally—of what I want to do next.

AB:  You know, that actually reminds of a conversation I had with the author of Blackfishing the IUD, Caren Beilin. It is activist piece of work, about chronic illness problems that happen to mostly women, who have debilitating side effects from the copper IUD even after it has been removed. Doesn’t it seem unfair that we have to be the ones doing the research and writing books about it? We are artists. This shouldn’t be our job. Scientists should be doing this! And she was like, this is our job because we are artists. Maybe now is a good time to share your film. 

SA:  The film I am working on is a documentary called So Sick. I have been making it for the past five years, and right now I am at the place where I have finished shooting with my main subjects and have their story in the can. I am fundraising to now interview all the experts, which are the scientist and different experts that I am interviewing for the film.  But, funding for a film like this is incredibly hard.  And I am finding that even within the subgroup of subgroup of fundraising, talking to people with Lyme disease, I am being questioned and shut down because I am concentrating on women.  I am going to finish it, but, yeah—got to get that money, honey. 

 The clip I am going to show you is an introduction to one of the people I have been working with for the past, almost, five years.  She is here tonight—Kyla.  I forgot to ask you if you wanted to be called out.  I have three main subjects in the film that have been so incredibly generous with their stories and have worked with me this entire time. 

A film clip from So Sick is shown

There were no numbers about the demographic of people with late stage Lyme, that were still suffering when I started the film in 2014.  I had a suspicion that it was largely women.  I ended up cold calling every office manager who worked in a Lyme office and what I found was [it was] 90 percent women.  Then I reached out to, one of the largest—I think the largest—Lyme disease advocacy organization.  They also have the biggest patient population [to] study.  I reached out and asked if they have any information about what is going on with the gender of people who are sick with late stage or chronic Lyme, people who cannot get better. I told them I am finding 90 percent.  And [the person] said, “Yeah, you should keep going with that.” And I was like, “Can you tell me more?”  She was like, “You are going to have a really hard time.  And you are correct.  So, please, keep going.”

And, now, it is pretty common knowledge that 85 to 95 percent of patients with late stage or chronic Lyme are women. There are no easy answers for why that is.  There are several different answers for that. And now we are talking about medicine as a larger community, and the problems that they have with communication. 

So this is where artists come into help, because [doctors] don’t want to have to tell a complex story. 

There is solid science out now that shows that there is a gender bias within the Lyme disease blot test itself.  The Center For Disease Control says that in order to be positive for Lyme disease, you need to have five of these ten bands positive—that means you do have Lyme disease.  Solid science shows that women are returning twos and threes on their test and men are returning fives and sixes on their test.  So a ton of women are being told that they don’t have Lyme disease, when, in fact, they could.  This is horrible test—for everybody. It has additional failures that are glaring.  So, one of the first things that I think needs to happen is that the test shouldn’t be given to people anymore.  Anyway, that is a bit of the background information.

ER: Amy, in your afterword, you observe something that sums it up very aptly: “We are lucky to be living in a renaissance of art and activism about chronic illness and disability.” 

Sini, your documentary is certainly part of this.  In Amy’s interview of Sini in Bitch Magazine, you cite the documentary Unrest. I’ve found in my research, a lot of people with ME have said they showed it to their family, and because of it, their families now they believe it is a real disease.  I am also thinking about the moment in Tender Points where Amy, your friend is empathic to you.

I’m interested in this bearing witness to invisible illness as a form of healing.  I am wondering if y’all have thoughts on that, especially in our current moment: there are a number of people with these illnesses—it is rising. But the pace at which people are getting sick exceeds the degree to which biomedicine can capture and understand them within their current frameworks. 

AB: I took some notes based on some of the things Sini, Emily, and I were talking about over email for this event, and [this note] was peeking out of my book: “Western biomedicine rejects anything other than itself.” I think that sums up the problem.  It has narrow ideas of what medicine should be doing and the problems it should be solving and how it should be solving them.

SA:  It seems obvious, but I think we are at a place in medicine and science that we are at with popular culture all the way across the board.  Everything we interact with is falling apart: the gate keepers, who are mainly white older men who have been holding on to power who designed most of the systems that we live in from the beginning. I don’t mean to sound like [I’m calling out] “The Man,” but patriarchy is collapsing.  I actually feel really hopeful about medicine and science and all of it, and about our life in general, because I know that there are so many brilliant young people that know how to communicate, because they have grew up in a different era. 

I think so much of the problem is a lack of knowing how to communicate, and then unrealistic expectations that we have set up for doctors.  Nobody tells doctors that they don’t have to know everything.  The system that we have right now kind of says, “If I don’t know what is going on with you, then there it is nothing going on with you.” To say that out loud, it is actually embarrassing.  Who would want to stand by that claim?  So we don’t have to do the activism with doctors—it has to start in medical school.  Who wants to be a fucking doctor, when you are supposed know everything, and your patients totally attack you when they tell you that you are wrong?

AB: A lot of people want to be a doctor, because doctors get to know everything.  If you are a doctor and you are here [at this event], I am not talking about you.  But if you look at the people who become doctors, it is people who like to know everything. 

SA: I think we are setting them up for total break downs and burnouts in their careers.  I am thinking of people who are not yet in medical school.  Teaching, education and the information they are going to go out into the world with—it is problematic. 

There was a woman who was a bioethicist, who I am hoping to interview.  She was saying that when patients walk into their doctor’s office, 50 or 60 percent, I think, walk in with subjective symptoms of something, and only 40 percent have objective evidence of that. So, that’s half of the people that walk in.  What is still currently taught [in medical school], you will be taught to say, “That is not true,” that their symptoms can’t be true.  But it is true!  That 50 percent with subjective symptoms is getting steered towards a psychosomatic diagnosis.  This fucks up a true psychosomatic diagnosis, because such a thing does exist.  But doctors have taken, “I don’t know because I don’t have a test for that,” and made it all psychosomatic, that it is “all in your head.”  So that is how American medicine—as an institution, as a business—started, and we are still there.  But not everybody gets treated that way.  We know the demographics of people who really get stuck in the psychosomatic illness, having to do with class, race, sex. 

AB: It is interesting for me, because my chronic pain developed directly after a traumatic event—for me, there is no question.  But I have talked about it to other people occasionally, and I have seen other people feel kind of threatened by that idea that chronic pain could be something related to emotional trauma.  And I understand that, because so many people get told that it is all in your head.  That is damaging, and it prevents them from getting care.

SA:  Amy’s book is brilliant.  When I first read it, I was excited and blown away.  I am like, “Fuck yes! Who is this person?”  I had to find you right away.  I thought that it was so incredible that there is a sexual trauma, and immediately following Amy’s body ends up being in incredible pain.  And she puts the two together.  That is radical.  It has not been done a lot in the arts, for obvious reasons.  People don’t want to get painted into one corner: somehow if you say that this is related to a traumatic event that happened in my life and now it is effecting my body, people will immediately go to “it is all in your head.”  We are skipping the whole point of that it is happening in the body. 

Myself included—I have never wanted to talk about my traumatic past or the sexual trauma I experienced when I have been at a doctor.  I also don’t want to talk about the fact that I am in recovery, or that I didn’t graduate high school.  There are all of these things about myself that if I bring into the room, with the doctor, I am a goner.  I’m also gender nonconforming.  They are like, “Psycho, get out!”  That has been my experience. 

It was so brave [of you], Amy, and I hope you don’t hate that word. This was like totally, tits out, just straight up, “I got raped and my body is fucking falling apart.”

AB: That was the working title of the book. <laughter>

I want to say, quickly, that is something that is going to come up in the next clip we are going to show [from Sini’s film] of a brilliant Iranian writer.  I think of that person as the example of the mischievous patient.  She is somebody who is on drugs and smokes and drank.  She is not trying to package herself as a patient who is doing all the right things. 

SA: I find it so powerful.  I get so scared when she tells me when she walks into a doctor’s office, and she tells them, “I have this and this!” I am like “Ahh!”  I go in there so afraid that I am in trouble for walking in the door.  But thank God for you guys—feeling emboldened enough.  Obviously, I am attracted to it, that is why make work about it. 

AB: So I am not going to read from Tender Points after all that, but this is from the novel I have been working on.  I wanted to read from it because it is just a different way of writing about disability.  The novel is not about disability—it is about a character who is a writer and a friend, sometimes not a good friend, but she is trying, and she has fibromyalgia.  But that is not what [the novel] is about.  When I started to write, it didn’t occur to me to give her fibromyalgia.  But then I thought, why would I want to miss the opportunity to bring in a beautiful character with fibromyalgia?  As I said, she is a writer.  She and her best friend flew to [visit] her parents:

As soon as we stepped inside, my parents came at us with hugs. They liked Leigh; they’d known her for a long time. My mom led us to the kitchen. “Your father went a little crazy at Trader Joe’s,” she said. She opened the fridge and the freezer to show us. 

I tore the plastic wrap from a family-size multigrain lasagna and put it in the toaster oven. The dining room table was set for company: all the newspapers had been gathered into one neat pile and there was a linen placemat at every seat. My mom nudged a bowl of pretzels towards Leigh.

“So, Ruthie says you have a new book,” she said.

Leigh grinned. “It’s true. I wrote a book—I can’t believe I wrote a book.”

“Do you have one with you?” asked my dad.

“Of course she does,” I said, rolling my eyes. “We’re on tour.”

My mom frowned. “Leigh, we would love to see your book. Could you show us a copy? Only if it’s not a pain in the butt to unpack.”

Leigh went to get a book.

My dad reached for a pretzel. “What will you be reading from?” he asked.

I paused. I didn’t know if I wanted to mention the zine, or any of my writing on disability. My parents have trouble understanding that I’m disabled, which is painful, because it means they have trouble understanding me. For them, disabled is a wheelchair or a cane or a hearing aid, something they can recognize and understand. And I have no such signifier, just chronic pain and fatigue. They know about the jobs I’ve quit, the events I’ve missed, the mornings I couldn’t get out of bed, but that doesn’t look like disability to them. They like to understand my condition as temporary, my problems as isolated incidents. And I get it: they did everything they could to raise a healthy person, and I look like a healthy person, so we might as well agree that I am a healthy person.

The last time I’d visited, my dad was excited to share some building gossip: there was, he said, a man on the fifth floor who walked with crutches, but—and here’s where things got interesting—he didn’t use the crutches all the time! My dad believed he’d caught our neighbor in some kind of insurance fraud scheme. He told me this in the kitchen while I was pouring myself a cup of coffee. My hands started to tremble and I put the mug down on the counter. “Just because someone doesn’t use crutches all the time doesn’t mean they don’t need them.” I tried to keep my voice calm and even. “That man is the same as me. When you say you think he’s lying about his disability, it’s like you think I’m lying, too.”

Better not to mention the zine. “I don’t know yet,” I said. “I might read some poems or part of an essay.”

“I’m sure whatever you read will be excellent,” said my dad, smiling warmly. He had pretzel flakes caught in his short grey beard.

I will stop there. 

SA:  [Emily’s] original question was about friendships—which Amy’s book is a lot about, my work is a lot about—and the visibility and how that could possibly be healing within your own communities. 

While you are not being recognized by the world, are your family and your friends recognizing you for your illness?  I feel that it is complicated. I am so shocked that I have lost friends, but I have.  If somebody would have told me fifteen years ago that I would lose friendship because they didn’t believe I was sick, or they thought I was using my sickness as a way of getting out of dinner plans or work, I would have said that is crazy—that is not my friends, that is not my people. 

There was a lot of heartbreak that went along with losing several friendships.  It is so important: we do need that kind of acceptance, while the world is trying to catch up.  A lot of us have found it within these communities where we are finding each other: there are amazing new friendships that are happening. 

But it’s important to ask the question to the wider general public: why they can’t believe women when they say they are sick?  Even progressive, feminist people, hipsters, people within my own community. A good example is the creators of Transparent. The writers are great people.  But the first episode, within the first five minutes, there is a joke about Lyme disease.  And I was immediately filled with rage and embarrassment. 

AB: That is why there has to be more representation of people writing about their own experience.

SA: In 2020, there are over 2 million people in the U.S who are suffering from ongoing Lyme disease sickness and illness.  Have 2 million lost their minds, or does medicine maybe have it wrong?

ER: I want to read this quote from the interview in Bitch. Amy, you had asked Sini, “Why do you think so many doctors do not acknowledge Lyme disease as a real illness?” Sini, you answered: “Holy shit, I can’t figure it out.”  I think both of you are trying to do the work of untangling that.  On the one hand, women are not believed when they go into their doctors’ offices.  There is a process of: “It is visible or invisible.”  I think it goes back to what you write, Amy, in the opening sections of Tender Points about the ways that women’s bodies are thought of by medicine as “mysterious.”

AB:  I had an experience where a doctor read [and reviewed] Tender Points.  It was very strange.  I think he thinks he wrote a good review.  He said a lot of nice things, but ultimately, he missed the point.  He said it is very insightful, that it teaches him what fibromyalgia is for Berkowitz.  But [he said] Berkowitz makes a mistake when she talks about Western medicine, because she thinks that doctors treat patients [as having] hysteria as a diagnosis [when we don’t use that diagnosis anymore], so she is confused.  I think it is interesting to consider pain to be mysterious or not mysterious.  Medicine was never made for women, or for bodies with uteruses.

A second film clip from So Sick is shown.

SA: [This clip] shows a young woman with tattoos on her face, and [at one point] doing graffiti. When I put this clip on our Facebook page, I got so many messages that were like, “Oh, my God, we are looking forward to your film. Please tell me that this is not the person that is going to represent us?”  People said, “How is this going to speak to our demographic?  To our people?”  My jaw kind of dropped, but then at the same time [I was not surprised]. Who is a “good patient” or a “good representation?”  “Upstanding citizens” should not be the only visible ones.  They call it a rich lady disease for a reason—because that is the only people that have a voice in this.  People from Connecticut, people with money.

ER: Going back to the “good patient” or “right” representation, talking about trauma or anything psychological is often quite a third rail in mainstream patient advocacy organizations, which I know from my research on ME/CFS. And as Sini said, confronting trauma, or representing the “imperfect” patient, is one of the most radical things that you both are doing in two different ways. I am wondering since Sini mentioned it in the context of Lyme—Amy, did you get any pushback from the fibromyalgia patient community?

AB: There was no pushback.  Occasionally, I would have a conversation where someone is clearly uncomfortable with the fact that I know that my physical condition was caused by a traumatic event.  It is disturbing to them because they may have a different relationship to trauma.  But it doesn’t mean it is not real.  Your brain is in your body.

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