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It’s Not Monsterism, It’s PMDD

In 2017, an acquaintance who eventually became my boss posted on social media about being diagnosed with Premenstrual Dysphoric Disorder (PMDD). She described it as having extreme anxiety and panic symptoms the week leading up to her period, all of which disappeared the moment she started bleeding. The post lingered in the back of my mind for months as I navigated my own menstruation issues, namely the irregularity of my period and the mood swings I experienced leading up to my bleeding days. The latter had been getting worse, compounding my general anxiety into something acute and sometimes frightening. I cried at work. I had gaps in my short-term memory. I fought more often and more intensely with my then-partner. I couldn’t sleep. I struggled to manage my usual task load. And because my periods were so irregular, they’d last between 2-7 days and could occur as close together as two weeks or as far apart as several months. I never knew when I’d turn into a monster, only that when I did, it meant my period would arrive in a few days.

I’d been seeing a therapist for almost two years at that point and we’d talked about medication to treat my anxiety and CPTSD, but I said no each time because I worried medication would somehow change me… or make things worse. I grew up in a family where mental illness wasn’t discussed, let alone medication for managing it.

I distinctly remember the day my ex asked if I had considered I might have PMDD. We were in their mom’s car on the way to Trader Joe’s, me in the front seat to prevent motion sickness and them in the backseat playing an episode of My Brother, My Brother, and Me over the car speakers. I don’t remember how we got on the subject or what led to them asking that question. But something clicked in my mind and I promised I’d talk to my therapist about it at my next session. In the meantime, I reached out to the acquaintance who wasn’t yet my boss about her diagnosis. She told me the only way I could even possibly have PMDD was if I didn’t have any other kind of anxiety. I did a little research and decided she was misinformed, and that I would still ask my therapist about it.

At our next session, I asked about PMDD and my therapist said I was a candidate for diagnosis, but I would have to talk to my general practitioner about treatment since she wasn’t a psychiatrist and couldn’t prescribe medication. I expressed my hesitation about medication (again) and she said something that changed my entire attitude: “When you’re physically ill, you can take medicine to feel better. When you’re mentally ill, you can also take medicine to feel better.” Now, it seems like such an inconsequential thing to say, but at the time, it was life-changing. Literally.

When I visited my general practitioner, I worried he wouldn’t believe me, or that he’d make me jump through flaming hoops to “prove” I had PMDD, if he knew about the diagnosis at all. I didn’t know it at the time, but Premenstrual Dysphoric Disorder had only been added to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) in 2013, just four years earlier. Per the diagnosis criteria, you must experience at least five of the following symptoms in the week before your period, and they must decrease or disappear at the onset of menses: mood swings; increased interpersonal conflicts or irritability/anger; depression/hopelessness; anxiety; difficulty concentrating; decreased interest in activities; marked lethargy/lack of energy; change in appetite; sleep issues/pattern changes; sense of overwhelm; physical symptoms such as join/muscle pain, breast tenderness, bloating, or weight gain. I dealt with seven of the symptoms from that list and prepared myself to defend each one to my GP.

Luckily, I didn’t have to. He immediately agreed with my therapist and prescribed me an SSRI that he encouraged me to take all the time both to help my generalized anxiety and to help my PMDD symptoms. Going on medication turned me into a person again. I experienced a slight uptick in anxiety right before my period, but I no longer cried at the drop of a hat or lost control over my life. I couldn’t believe I’d been dealing with something I had never even heard of for so long, nor that I’d been so aggressively against taking medication that could help me move through life in a safer, less stressful way.

The Cycle Makes PMDD Research Accessible

In The Cycle: Confronting the Pain of Periods and PMDD—the first non-academic text about PMDD to hit shelves (as far as I know)—author Shalene Gupta traces her own PMDD journey and explores the history of menstruation stigma, mainly in the West. Gupta writes that her PMDD manifests as “an implacable storm of anxiety, depression, and rage. I scream; I throw things; occasionally, I attempt suicide. Then, just as suddenly as the storm appears, it vanishes only to come back next month.” Gupta received her diagnosis in 2020 and had never heard of PMDD beforehand. For most of her life, she writes, “I assumed I was simply a bad person.”

This sentiment is shared amongst the people interviewed in The Cycle. Some of the people Gupta talked to chose to isolate themselves completely, leaving their partners and families because they didn’t know how to control their explosive emotions and rage in the week leading up to their period. Many reported a decrease in symptoms when they were alone. Others attempted to or considered dying by suicide. According to the International Association for Premenstrual Disorders (IAPMD), founded in 2013, 34 percent of people with PMDD reported suicide attempts and 72 percent reported suicidal ideation because of their cyclical, debilitating symptoms.

The latest data from a group of researchers led by Dr. Thomas Reilly at the University of Oxford suggests that 1.6 percent of people who menstruate meet the strict criteria for PMDD, which is equivalent to approximately 31 million people globally. The study also suggests that a higher percentage of people—3.2 percent—are suspected to have PMDD, but their symptoms haven’t been tracked long enough to confirm diagnosis.

Although PMDD was only added to the DSM-5 in 2013, Gupta notes in The Cycle that researchers have known about it since the 1950s. Treatment is relatively straightforward for most people with either birth control or SSRIs. So why did it take over half a century for PMDD to have its own listing in the DSM? There are several reasons, some of which are rooted in the social stigma of menstruation and others of which are centered on feminist concerns that listing PMDD as a true disorder would make people believe that all women experience severe psychiatric symptoms in the week before menses, thereby further fueling misogyny and thickening the proverbial glass ceiling.

“Researching the history was challenging because a lot of the people who were around for that whole debate about whether or not PMDD should be an official diagnosis were quite a bit older, and some of them had passed,” Gupta tells me over Zoom. “At one point, I was just googling the online white pages and calling phone numbers and leaving messages, hoping I had the right people. I was lucky someone got back to me. I was stunned. I was not expecting that. In another case, I did an interview where I ended up deciding to scrap the answers because the person kept repeating the same sentence over and over again. They were quite a bit older, and I just felt like maybe it wasn’t fair to quote anything. That was really tough. They were a key decision maker.”

Another source mailed Gupta a VHS tape, which sent her on a hunt to view its contents. She called libraries all over Massachusetts to rent a VCR-to-DVD converter, then had to track down a DVD player. When she finally inserted the disc, she discovered it was in French—a language she doesn’t speak.

Gupta says she wanted a global representation of menstruation stigma and reached out to multiple experts from around the world. She started with China and India, which are both part of her heritage: “Maybe that informs my perspective on menstrual stigma. I quickly realized there’s an entire book about the world of menstrual stigma.” Unfortunately, her leads didn’t go anywhere. “I emailed so many professors and a lot of them said, ‘We’ve never studied the history of menstrual stigma in India,’” she tells me. The only person willing to go on record from China was a white person with no academic affiliation, which didn’t feel like the right move to Gupta.

Although The Cycle chapter “The Periodic Silence Around Menstruation” is Western-focused, it’s packed with information about how pop culture treats menstruation to how Reddit users discuss it online. When I ask Gupta what surprised her during the research phase of writing this book, she says, “Really anything about the history of menstrual stigma. That entire chapter was mind-blowing. I think the experiments with injecting mice with menstrual blood and then they die and it’s like, ‘Oh, poisonous,’ instead of determining there are other reasons that the mice are dying.” She also cites the debacle around Serafem, a new application of fluoxetine released by big pharma corporation Eli Lilly in the early aughts to protect its patent on Prozac. The company marketed it as a treatment for PMDD, which was accurate, but it failed to differentiate between PMDD and PMS, muddying the waters significantly for researchers, doctors, and patients alike.

PMDD Affects Everyone Differently

My copy of The Cycle is highlighted, written in, flagged, and dog-eared. I’ve taken photos of certain passages to send to friends and recommended the book to those who have reached out to me to ask how I got my PMDD diagnosis. I’ve always been vocal about PMDD because it’s so unknown and I’m thrilled that there’s finally a non-academic book I can tell people about when they ask for help.

On the day Gupta and I speak on Zoom, she admits she’s feeling “regretful” after reading some one-star reviews of the book that criticize it for not providing anything “new.” For people who have been in the trenches doing research, that’s probably true. But I found Gupta’s writing incredibly affirming—and I can’t say enough how helpful this book could be for someone desperately seeking answers for their premenstrual symptoms and pain.

“I joke that [writing The Cycle] was cheaper than therapy,” Gupta tells me. “I got freshly diagnosed and started researching and writing this book, so there’s a progression throughout it, sort of my attitude changing. I don’t know how apparent it is to the reader. During the course of writing the book, I changed my dose of SSRIs. There was a time when I got off the meds and I felt like I was writing my own story. It also helped me get to a place of acceptance with the past: I can’t change it. I had so much guilt and so many big feelings around what had happened before I was on medication. And I still feel extremely vulnerable and raw about all of that.

“I feel very grateful that no one has come out of the woodwork and been like, ‘You’re an asshole,’” she continues. “I was and I can still be an asshole. But there were a lot of things happening because of my PMDD being undiagnosed. There were a lot of nights I’d write, go to bed, and then lie awake the whole night just rehashing the past and writing it from different angles. My poor editor was amazing, but there were times when I turned something in and she’d be like, ‘Shalene, this is three paragraphs about you having feelings about your desk. That could be a paragraph.’ And that was me just making peace with something that had happened in the past.”

Gupta says SSRIs have made a huge difference in her PMDD symptoms. She’s currently going through IVF, which is a new ballgame entirely. There isn’t much research about the intersection of IVF and PMDD, but she knows enough now to at least figure out why she’s feeling what she’s feeling. The day of her book launch for The Cycle, Gupta had an IVF treatment and she says she woke up with “extreme anxiety” that made her want to run away. However, she went to the event and “it honestly went way better than I could have ever hoped for in my wildest dreams.” That said, she did feel overstimulated, spiraled all night instead of sleeping, and the next day had a major hormone crash.

“It’s unclear how much was IVF, how much was PMDD,” she says. “The day after the launch, I was freaking out, and then somehow I was like, let me check where I am. Let me check the side effects of all these things I'm being pumped full of. And I was just like, oh, mood swings up the wazoo. And I'm at a certain time in my cycle. And I was just like, okay, we don't have to change careers. We don't have to go into witness protection and change our identity an embarrassment.”

Gupta admits she struggles not to read every review of The Cycle because the book is so personal. She lays bare all of her insecurities and many of her worst moments with PMDD in the book, which don’t paint her in a very flattering light. But she also takes responsibility for those moments and doesn’t dismiss them as inconsequential because they happened when her PMDD was undiagnosed. She even dives into the necessity of taking responsibility and apologizing. as well as how blame factors into situations where one or more parties in a conflict are both at fault and dealing with something out of their control. In this chapter of The Cycle, she cites work by philosopher Mike W. Martin about the connection between mental health and morality, as well as work by Professor Hanna Pickard, who teaches philosophy and bioethics, regarding responsibility without blame.

“On one hand, it's lovely when people are so nice, but on the other hand, I want people to have their thoughts and their feelings,” Gupta says about reading reviews. “I want to be careful with my mental health. I know there are certain times of the month when it just sends me spiraling. Should I have written this book? Is it helping anyone? Why didn't I do blah, blah, blah better? Oh my God, I made this mistake. I'm such a fuck up. And I do want to write more books. I want to do more things. I don't want to sit in a pit of my deepest anxieties, but I carry those voices around constantly in my head.

“I have a tendency to hyperfocus on what's not going well,” she continues. “But I have also been blown away by how kind people are. I have gotten a ton of personal messages that were just like, ‘Thank you for doing this. Thanks for paving the road, making me feel seen and heard.’ Honestly, I thought it was going to come out and people were going to be like, ‘She's a monster. This person sucks.’ The positivity and the number of people who are coming out and saying, ‘I have this too, you made me feel seen,’ has blown me away. There are still times when I feel like I'm the only one. I don't know that many people with PMDD in my regular life. I'm lucky enough to know a few, which I think is more than most people know, but feeling like there’s a community we’re all in together has been incredible.”

Like Gupta, I have few personal relationships with people who have been diagnosed with PMDD, though as mentioned above, I have friends who are questioning if their symptoms match the criteria for diagnosis. I’m also at a new, strange point in my PMDD journey because I had a hysterectomy last May but, at the urging of my OBGYN, kept my ovaries to avoid going into early menopause. I didn’t notice in the first few months post-surgery, but I’ve since realized that I’m still experiencing PMDD symptoms without the “stopping point” of my period. I am still on medication for anxiety, which helps with my symptoms overall, and they do dissipate after a few days—but I have to be more active about tracking my cycle since I no longer have a period.

During our Zoom call, I can’t help but gush about how much Gupta’s book means to me and how much of an impact I think it will make for people with PMDD, especially those who don’t have a diagnosis. I sort of spew my life story at her and she’s incredibly graceful about it. As we’re wrapping up the call, I ask her what she hopes readers will take away from reading The Cycle and her answer makes me like her even more.

“For readers who have PMDD, they're not alone in whatever form that their PMDD takes. They're not alone. And it's not their fault. This is not about a failure of willpower or morality. This is a biological issue that is out of their control,” Gupta says. “And I hope readers who don't have PMDD take away the same thing because writing this book really changed my perspective on mental health and character. I feel like I grew up in an ableist society and I absorbed a lot of messages. I grew up in Minnesota where there's a lot of premium put upon being nice.

“Looking into the literature where Plato is talking all about how virtue is about self-control—that may not be biologically possible for some people. I have stopped trying to categorize, was this good? Was this bad? What do I think happened? How do other people feel? How effective was it at getting what you wanted done and meeting your goals and what realistically can be changed?”

What Happens Now?

Gupta has no intention of moving on from PMDD research. Since she turned in the final version of the book for publication, papers about PMDD have been released that she wishes she could have included in the text. (I tell her a 10-year anniversary edition with new information could have merit.) Since Gupta can’t change what’s in The Cycle, she intends to release a monthly newsletter in which she interviews researchers and asks them to put new papers in layperson’s terms so the information is more accessible.

“I'm just really grateful that I got to go on this journey and to write this book. I had an incredible editor who somehow picked up this book and was like, yeah. And it is not easy to be heard with the PMDD. I have pitched many different things in many different ways,” Gupta says. “So I am grateful that someone at Flatiron picked the book and is publishing it and the support they gave me. And I'm grateful to everyone who reads it and who reviews it, frankly, because even the one-star reviews add to the trail of the book. They let people know, ‘Is this right for the reader?’ And well, someone took the time to do that.”

In addition to her newsletter, Gupta says she’s continuing her business journalism and working on a novel: “One day I will have something where my life makes sense and all the audiences build together. But none of my projects are related to each other.”

The Cycle: Confronting the Pain of Periods and PMDD by Shalene Gupta is available wherever books are sold. A copy of the book was provided by the publisher for review.

You can follow Shalene Gupta on Twitter and Instagram. See more of her work at ShaleneGupta.com.

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