A Series of Tender Points: An Interview with Amy Berkowitz

amy berkowitz with cat on shoulder

I feel particularly passionate about this interview, which I conducted with poet Amy Berkowitz about her forthcoming book, Tender Points (pub. date June 20, 2015). Amy and I met one another in graduate school, where I spent many an afternoon in her kitchen—Amy is an extraordinary cook—while sharing stories about our lives. As described by her publisher: Tender Points is a narrative fractured by trauma. Named after the diagnostic criteria for fibromyalgia, the book-length lyric essay explores sexual violence, gendered illness, chronic pain, and patriarchy through the lenses of lived experience and pop culture (Twin Peaks, Teenage Mutant Ninja Turtles, noise music, etc.).

Basically, her book, which I was fortunate enough to read a review copy of, is about many of the things I care about. It’s also devastatingly and beautifully written. You can pre-order it here.

Also! You’ll have a chance to win a copy of the book at the end of this interview. Stay tuned.

tender points book cover

Q: Reading this book was very exciting for me. To indulge in our history together for a moment—you were actually the first person I ever knew who was diagnosed with fibromyalgia, as well as being the first person who affirmed my suspicions about some of my own traumatic experiences when we were in graduate school together. I was diagnosed with fibromyalgia later—and then late-stage Lyme and PTSD—but I feel as though those early conversations in your small kitchen were formative for me.

A: Yes! It’s great to connect with you about this. More conversations between people with fibromyalgia diagnoses, please. We don’t have to include this next bit in the interview, but I have to admit that I don’t have a clear memory of your telling me about your own traumatic experiences. I have a really poor memory in general and I think I tend to often block out things that are disturbing/trauma-related. So if you want to remind me about that, you’re welcome to. You’re also absolutely welcome to talk about something else.

Q: You were the one who told me that my own doctor experience had been one of sexual assault.

A: Oof.

Q: Which was interesting to me, because I had a certain kind of trauma narrative going for myself at the time that primarily centered around a specific rape. But this does remind me of a part of your book about imaginary paintings of women talking about rape, which I saw a form of elsewhere and loved.

A: Yes, there’s an essay in the book called “Paintings I Won’t Paint,” that was previously published in VIDA’s Reports from the Field series, which is a wonderful series in general. In short, it’s basically an examination of all the time I’ve spent throughout my life talking about rape with my female friends, describing our rapes, helping each other through PTSD, strategizing [about] how to make safer communities, complaining about Law & Order SVU. Raising up that unpaid labor of talking about rape to honor its importance, but at the same time to criticize the fact that we spend so much of our time obligated to it. Now we find ourselves in a meta-moment, we find ourselves as people in the essay. Talking about talking about rape.

Regarding multiple strands of trauma narratives: I’m not sure if you’ve had this experience, but for me, it’s interesting to think about how multiple violations/rapes/traumas can all kind of fold together in a person’s mind. There’s a part in the book where I realize that each doctor visit I had in my early 20s, experiences where I let an uncaring male doctor treat me disrespectfully, were more traumatic because they layered upon this older experience of being raped by a doctor. And then calling MetLife to sort out my disability claim felt incredibly traumatic, because it was effectively another abuse by the medical system.

“Tender points” are the famously vague diagnostic criteria for fibromyalgia, and I also thought of the book as being a series of tender points; it’s made up of fragments, and many of them—being about difficult/sensitive subjects like rape and chronic pain—are, well, tender.

Q: Oh my God, I just had a terrible call about disability benefits two days ago that made me cry. But that’s a whole other conversation, too—the trauma of having to explain one’s issues to a generally uncaring system, a system that’s overwhelmed and centered around binaries and checklists.

Now that we’ve kind of segued into talking about the medical side of trauma, I want to talk about the title of the book, which is this great, great title. I think it’s absolutely perfect. So, to ask a very boring question—how did the title come about? I’m shit at titles, so I always wonder.

doctor performing tender points exam

A: This may be a side note, but this [related] video is fucked up, and I think very indicative of the white male doctor /female fibromyalgia patient dynamic. [The video is a demonstration of how tender points are assessed.] Basically, this literally listless woman named Deb is swiveled around as the doctor pokes her 18 tender points. Just the lack of agency there is stunning.

The title felt very obvious. “Tender points” are the famously vague diagnostic criteria for fibromyalgia, and I also thought of the book as being a series of tender points; it’s made up of fragments, and many of them—being about difficult/sensitive subjects like rape and chronic pain—are, well, tender. I liked reclaiming the phrase “tender points,” and using it to signify my own ideas about fibromyalgia, instead of this odd diagnostic tool.

baby carrots

Q: When did you first begin to see the link between trauma and the fibromyalgia diagnosis, and how did that inform the writing of this book? A question that I think your book brings up quite well is how the body/mind divide isn’t very helpful when it comes to these kinds of diagnoses.

A: The link was there from the start: I was lying in bed one night–after an unpleasant visit with a doctor who talked to me in a disrespectful way–and something about the way this doctor talked to me shook something loose inside of me. And, lying there, I suddenly remembered being raped by my pediatrician as a kid. I fell asleep, and then woke up with pain all over my body, which was diagnosed as fibromyalgia.

So to me, the connection was obvious. Given my experience, it’s hard for me to understand why other people would have to be persuaded that the mind and body are one, and that trauma and other emotional/psychological experiences can manifest themselves physically. And other people’s unwillingness to see this connection–especially doctors’ unwillingness–is limiting our understanding of the body and how to heal it.

Q: There’s also a conversation to be had about skepticism, and about not believing women in general; you exhibit this painfully in the book with what I’m assuming are quotes from forums and the like, from people who claim “fat women” who are “lazy” are the people who claim the fibromyalgia diagnosis. Which is to say, There is no pain, and also, There is no trauma. It’s hard to be a woman and to be believed.

A: What I’m doing how is this loud howling/groaning combo, which is my gut reaction to this kind of thinking. Something I wonder about is the identity of these people (they mostly seem to identify as men) who are skeptical of and angry at women who have fibromyalgia. Where is this anger coming from? It’s so powerful. What are these men afraid of? What are they reacting to?

As women, we aren’t trusted as reliable narrators of our own experience, or as authorities on anything, really. But also, I don’t think there’s a ton of awareness around the link between fibromyalgia and rape/trauma.

Q: I think it IS different from the anger and skepticism that comes in general about 1.) rape and trauma alone 2.) claiming illness—and perhaps subsequent assistance, such as disability benefits—alone.

A: As women, we aren’t trusted as reliable narrators of our own experience, or as authorities on anything, really. But also, I don’t think there’s a ton of awareness around the link between fibromyalgia and rape/trauma. More awareness around that would probably be a good thing.

Q: I actually think people are afraid to make that link, because that link seems to inherently feel like… an attack on the “legitimacy” of the physical pain and other consequences of things such as fibromyalgia.

A: That’s a good point. Because who’s a bigger liar than a rape victim? If she lied about being raped, she’s lying about the pain, too. And another thing I mention in the book is that I’ve found that some fibromyalgia patients themselves refuse to believe the mind-body connection because they don’t want to think “it’s all in their head.”

brain dust

Q: There’s a lot of research in the book. There are a lot of quotes from theory and literature, and things like the awful comments we were just talking about. What was that research process like?

A: The research process was fun. The more I talked to people, the more books were recommended to me. Books led me to other books, the Internet is full of angry skeptics on message boards AND useful information, I live near a public library, etc. The research felt like exploring a few different rabbit holes. I just followed whatever trains of thought felt interesting and learned as I wrote.

Q: There was something else I wanted to bring up—about circling around talking about trauma—in real life, but in literature, too. You talk about your primary trauma directly in the book. It made me think about—I don’t know if you followed this, but Roxane Gay received some flak for not speaking explicitly about her childhood assault in Bad Feminist, which later led to her writing a separate piece about it. Did you always know that you were going to specify what happened to you when you were working on the book?

A: I haven’t read Bad Feminist yet. And I didn’t hear about this, but why did people criticize her for that? Isn’t that her choice? Did it feel like a big hole was left in the book by its omission?

Q: I’m trying to remember what exactly happened—it had to do with an essay in the book in which she was criticizing the act of eliding rape in media, as opposed to showing the brutality of it. And people were saying: Well, you didn’t show the brutality of your own experience in these essays.

A: That’s a stupid fight to pick, in my opinion.

Q: People generally pick stupid fights with Roxane Gay, I have noticed. What was your decision process like, in terms of deciding how much to say about your own history of trauma?

A: I think I knew I was going to mention it, but I didn’t know what that mention would look like. I wrote the book in a Google Doc, which was useful for writing about trauma, because if I wrote something that felt difficult or triggering, I could just scroll down and move on. When I was ready to print out the whole document, I looked at the places I described the rape, and decided what I was comfortable saying publicly.

Q: I’m interested in the fact that you wrote the book in a google doc, because [the book] has a fragmentary quality to it. How did you approach its structure?

A: I knew I wanted it to be in fragments from the beginning, because the story itself is fragmented: a repressed memory that connects to a trauma that causes an illness and so on. So from the Google Doc, I put together fragments that ranged from one paragraph to a couple of pages in length. When I was invited to do a reading, I’d collage 10 or 15 minutes of fragments together. When it came time to assemble the book, I organized all the notes into polished fragments, and then, with the help of poet Stephanie Young, sat on my living room floor and literally cut the fragments apart and taped them together.

Q: I love hearing about stuff like that. And I think I’m going to start wrapping up here, too. First, thank you so much for doing this interview with me. It’s been a treat and an honor. Finally, I want to ask—in terms of your work, where do you think resilience fits in with your path as a writer?

A: Thank you so much! It’s great talking to you, and I appreciate you taking the time to do it. [About resilience], that’s a good question. I think I’ve grown to become a pretty resilient person, given all the shit I’ve had to deal with, and part of the way I’ve coped is by staying interested in my problems and where they fit into bigger-picture problems, and finding satisfaction in writing about that.

Q: I love that.

To be entered in the giveaway for a copy of Amy Berkowitz’s book, Tender Pointsleave a comment here with a part of the interview that particularly struck you as important and/or interesting, and why.

BIO: Amy Berkowitz is the author of Tender Points, forthcoming from Oakland small press Timeless, Infinite Light in June. Her writing has appeared in 580 Split, Dusie, and Where Eagles Dare, and on the VIDA blog. In 2014, she was a writer in residence at Alley Cat Bookstore & Gallery. She lives in a rent-controlled apartment in San Francisco, which serves as the headquarters of her small press, Mondo Bummer Books, as well as the venue for the Amy’s Kitchen Organics reading series.

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  • A lot of this interview really stuck with me. It’s hard to choose just one part. All of the points of agency, of not being believed as a woman with trauma and illness. I’m sure I’m not the only one who feels those connections in my own story.

    Possibly my favourite part is about the title of the book though:

    ” The title felt very obvious. “Tender points” are the famously vague diagnostic criteria for fibromyalgia, and I also thought of the book as being a series of tender points; it’s made up of fragments, and many of them—being about difficult/sensitive subjects like rape and chronic pain—are, well, tender. I liked reclaiming the phrase “tender points,” and using it to signify my own ideas about fibromyalgia, instead of this odd diagnostic tool. ”

    I love the idea of reclaiming and using this term in a different way, especially a word and process that was part of my own terrible experiences in seeking a diagnosis. I still remember the time that I had to go through being tested for tender points twice in a single exam with a rheumatologist and he was so indifferent to the pain it was causing me. My boyfriend was there at the time trying to hold back rage at the pain I was being caused, while I was struggling not to scream.

    I’ll admit that I often skim through or skip a lot of book review interviews, but this one I couldn’t. I feel like this will be a “must read.”

  • ” People generally pick stupid fights with Roxane Gay, I have noticed. ”

    Because: YES.

    And because there is this great motif of resistance to just how much and how destructively people pick stupid fights with women, pervasively, running through this conversation that I really appreciate.

  • I really enjoyed reading this interview, but the part that particularly struck me was this:

    “Q: I actually think people are afraid to make that link, because that link seems to inherently feel like… an attack on the ‘legitimacy’ of the physical pain and other consequences of things such as fibromyalgia.

    A: That’s a good point. Because who’s a bigger liar than a rape victim? If she lied about being raped, she’s lying about the pain, too. And another thing I mention in the book is that I’ve found that some fibromyalgia patients themselves refuse to believe the mind-body connection because they don’t want to think ‘it’s all in their head.'”

    As someone who is currently emerging from a year of difficulty and most likely depression, I am fascinated by the brain/mind-body connection. Our brains/minds and our bodies are obviously highly interconnected. But I don’t think that it ever really occurred to me how much my mind could affect my body. About six months into my “difficult time,” I ended up feeling the physical effects of my depressive state, including daily aches and pains that definitely had no other origin but my state of mind. I would be interested to read more about Amy’s experiences dealing with fibromyalgia and her thoughts on the brain/mind-body connection in Tender Points.

  • Thank you for this interview! I’ve fought against my own fibromyalgia diagnosis for a long time because of those angry skeptics who view women with fibro as “fat” and “lazy” (both things I’ve struggled with labeling myself, even before the diagnosis). I’ve encountered some in real life who don’t know my diagnosis and have said it’s a made-up disease etc, and have hardly ever encountered someone talking intelligently about their own experience of it. It’s led me to question the value of having a diagnosis (especially as I navigate the inefficacy of various medicines and find that lifestyle changes are what really help me the most)– but in this culture how do we acknowledge our physical pain without diagnoses? Bravo to Amy for writing about it.

  • It is so interesting how Amy described the process of writing her book, by using a google doc and then, to put the book together, “organized all the notes into polished fragments, and then, with the help of poet Stephanie Young, sat on my living room floor and literally cut the fragments apart and taped them together.” I’ve been thinking on and off about writing my (trauma related) story as well, but didn’t know where to start. Maybe I’ll take a similar approach! All the best Amy for your new book and thanks Esme for the interview!

  • Thank you for this interview. I so needed it today. I am living with lupus and today I had to go to a doctor because of some flu. And I am so scared of doctors. Ok, I have something more like doctors-phobia. Just thinking about going to a hospital… and I start to have full blown panic attack. I am looking for somebody like a coach to help me with this because I am in dead point. I am taking my meds, but I just can’t make all this blood checks to find out how my kidneys are – I am terrified. And while I was reading your interview I realized that I am also traumatized by how all this doctors acts. By their coldness… By something that Amy described: “I was lying in bed one night–after an unpleasant visit with a doctor who talked to me in a disrespectful way–and something about the way this doctor talked to me shook something loose inside of me.” Reading about somebody’s experience showed me that it could be traumatic. That I am not strange that I scared of people that can’t show me some kindness.

      • Dear Esme,

        Thank you very much! I know Grace’s website and her works. I think that I read about her on your Instagram? I don’t remember… Maybe because of her podcast with you… Anyway… I will save some money (this whole illness stuff is so bad for my freelancer’s budget) and contact Grace.

        • I hope it goes well. I know she has an opening right now for coaching–either way, you are showing up and getting up every day and that is fantastic.

    • Being scared of “cold” people doesn’t sound crazy at all! How can we put our trust in someone lacking warmth and genuine care? Quite frankly, we’d be INSANE to do that. Medical degree or not. You’re smart for listening to your senses and picking up that something isn’t quite right. Good for you. 🙂

      When I was pregnant with my first child 8 years ago, I set my initial appointment with the St. Luke’s Women’s Clinic because “pregnant women go to doctors.” The moment I got home from my appointment, I grabbed my laptop and looked up midwives. I didn’t experience anything traumatic, but the waiting time made me feel like I should be the one getting paid. And the way the nurse handled our ultrasound was so shocking. She jellied me up and then there was our baby on the screen. It was amazing and I was lost beyond words. I gazed at this energetic little being so clearly alive in my belly, even though no one else would ever know it was there, and as I laid there reveling in the moment, the nurse suddenly shut it off to go about her duties. I wasn’t a mother experiencing the joys or experience of pregnancy. I was just a number.

      There was no way in hell I was going to give birth in that kind of place surrounded by people with that kind of mentality, so I never went back a second time. There are DEFINITELY some great medical professionals out there, but many are just there running on the hamster wheel. Not a risk I’m willing to talk.

  • What a great interview! Very engaging! I enjoyed all of it.

    I was impressed to see talk of the mind/body connection. My mother has fibromyalgia, and it seems so clear to me that it’s due to the enormous emotional burden she carries (much of which she refuses to let go or actually puts upon herself). She definitely likes having her story as a victim and that has led to her holding on to every “bad” thing that has ever happened (and conveniently forgetting her role in these events). She is doing better thanks to essential oils and Ayurveda but she refuses to give up alcohol (or the blame and self-pity), and know she’s facing an arthritic condition in her wrist. I don’t doubt that fibromyalgia comes with pains and challenges, but looking at my mother, it seems clear that she’s exacerbating all of this because of her mindset, if not creating it all there completely. I’m sure that fibromyalgia can come about in various ways from various reasons, but I can sure see a connection between my mother’s mind and her body.

  • I finished Tender Points last week and it just blew me away, the best thing I’ve read in such a long time. I immediately put it in the post to another friend who I knew would love it. Then I remembered where I had seen the name before – here, of course! Thank you for this interview Esme, and Amy – thank you for your work.