Understanding and treating PMDD, with Shalene Gupta

[00:00:01] Hi. If you're new to Overlooked, welcome. Overlooked was created to fill a gap in storytelling around women's health and give voice to stories that often go unheard. We've done episodes about ovarian cancer, ADHD, cervical screening, and endometriosis. So check out our back catalog. And if you'd like to suggest stories or topics that we can do, get on our mailing list by signing up at overlookedpod.com. Now, back to the episode.

[00:00:34] My husband and I went on a road trip to the Berkshires and it was the middle of COVID. This was our first time out of the house. We were so excited. The story Shalene Gupta is about to tell you takes place in the fall of 2020. And it's an important one in her life. It was a gorgeous autumn day. The trees were just draped in scarlet and gold. Shalene is a journalist and writer based in Boston.

[00:01:03] She's softly spoken and she tells a great story. And the thing to know about Shalene is that typically I'm a fairly calm person, pretty non-confrontational, people-pleaser, Asian-American, Minnesotan. Like, we do not do conflict. But Shalene has PMDD, which stands for premenstrual dysphoric disorder. And at the time the story takes place, she'd been struggling with this condition for the last few years. What is PMDD?

[00:01:33] We'll get to that. I'd been looking forward to this for weeks. And yet, I'd just woken up with this storm in my head and I couldn't calm down. No matter what my husband said, I just kept getting angrier and angrier and thinking about past fights, past slights. And we had recently had a really terrible fight where he had mentioned that I was not as attractive as a past girlfriend of his. I could not get over this.

[00:02:02] I was just filled with anger and shame and loathing over myself for the way I looked and also for my inability to get past this as somebody who thinks of herself as a strong, independent woman who values herself for what she can do. And it kept building and building and we're driving down the highway and I'm crying and I'm screaming and I hate that I can't get control of myself.

[00:02:27] And I just, just want all of it to end and to go away. So, as we speed down the highway, I reach for the door. So, luckily, my husband has great reflexes, pulled over to the side of the road. I realized, oh my God, like all of this, this is not how I want to be. Like, I want to go on this vacation.

[00:02:56] And then I thought about the timing of my cycle and the timing of this medication. I was like, oh my God, I need to call my doctor. If you think about it, we don't talk about our periods. We don't really talk about PMS and we don't really talk about really struggling with conflict all that much. So, I just kind of assumed I'm a really bad person.

[00:03:27] This is Overlooked and I'm Golda Arthur. Shalene Gupta is the author of a book called The Cycle, Confronting the Pain of Periods and PMDD. Premenstrual dysphoric disorder is a severe form of PMS, premenstrual syndrome. It's wrought havoc on Shaleen's life. And the story you just heard is just one of many difficult moments brought about by this condition.

[00:03:52] In her book and in this conversation, Shaleen talks honestly about her personal story and how she struggled to get diagnosed and treated for this condition. She also writes about the stigma around menstrual health. PMDD itself was not recognized by doctors as a condition for a long time. And we also talk about if this condition could be used to undermine women. Today I still had some people ask me, should we be talking about PMDD?

[00:04:22] Is this going to hurt women in general? And number one, given the current political climate, I am very afraid that it is going to be used against women. At the same time, the answer to promoting women's well-being is not suppress information about a real disorder and suppress the avenues to treatment. That's coming up after a quick break.

[00:04:46] Are you curious about what it's like working in healthcare today? Do you believe in the power of storytelling? I'm Dr. Emily Silverman, the host of The Nocturnist Podcast, where healthcare workers share personal stories of joy, sorrow, and self-discovery.

[00:05:07] Each episode, whether a compelling performance from one of our live shows, an intimate series of audio diaries from one of our documentaries, or an engaging conversation with guests such as book authors or filmmakers, aims to connect, provoke, and inspire. Learn more at thenocturnist.com or subscribe to The Nocturnist wherever you get your podcasts. Hi, Shalene. Thank you so much for being on Overlooked. Thanks so much for having me, Golda. I'm really excited to be here.

[00:05:36] I'm really kind of psyched to talk to you and so much in awe of your book, The Cycle, because I thought that it was extremely original, extremely raw. It's an incredibly memorable book. Thank you, Golda. That means a lot to me because there were moments when I was like, I don't know if I should write this. No, it kind of been easy to write. Tell me a little bit about that. The funny thing was deciding to write it was really hard. That was a process.

[00:06:05] I remember I was going jogging with my husband and I first had the idea for this and it kind of unfolded in my head. I could see an outline. I could see paragraphs. And this does not happen to me often. It feels like a gift from the gods. And my first instinct was like, no, I can't. I have spent so much time in my life trying to hide PMDD episodes, make up for them. I have so much guilt around PMDD and what happens during my episodes. The last thing I want to do is publish this for public consumption.

[00:06:35] And my husband was actually like, you should really do this. I think it's a great idea, sweetie, which is why I'm married to him. So I put it together and I actually ended up working with a media coach, which up until that point, I had never done that. And the first thing she said to me is, Shalene, who are you writing this book for? And I said, I guess my 24-year-old self, if I had known the things that I know about PMDD now, if I'd known that I had a chronic illness, I'd known it was treatable.

[00:07:01] I'd known that there were other people like this and that I wasn't alone or a bad person. It would have been life changing. And then I burst into tears. And she was like, so you're going to write this book, right? And got off the phone with her and started writing. You write about these episodes, as you just mentioned, and they were driven by your cycle. And these rages, as suddenly as it appears, it disappears, you know, which is like, OK, that's an exaggeration.

[00:07:30] It's not, you know, like flicking a switch, but it comes so strongly and then it leaves. You write very expressively about what that felt like, you know, the moment then that it's over, that you're left with this mess that you made that you have to clean up. Anyway, I thought all of this was extremely relatable. But I want to start in a place where, like, let's get into the alphabet soup and let's get this cleared up. So what is PMDD and how is it different from PMS?

[00:08:00] Because I think we all pretty much know what PMS is, but let's talk about that a little bit. Yeah, so I have PMDD, which is premenstrual dysphoric disorder. And I got a diagnosis when I was about 30. And prior to that, I had never heard of PMDD. I had no idea what it meant. So premenstrual dysphoric disorder is a disorder where right around your period or right before you experience severe mood swings, dysfunction. And, you know, when people talk about mood swings, we have this idea of PMS in our head. Like maybe you get a little grumpy, maybe get a little depressed.

[00:08:31] For me, it was debilitating. It was I was not functional. Like I was having screaming fights with partners. I lost a long term relationship to PMDD where after six years, my boyfriend sat me down. He's like, I can't deal with this. Like, I cannot deal with your crazy. And the worst part was I couldn't be like, it's you. It's not me. It was like, no, this is me. I cannot deny this. And every month I'd think, OK, so I am going to get on top of this. Like I have coping mechanisms.

[00:08:59] I can predict down to the day when I'm going to have a meltdown. I got to the point where my partner could predict down to the day when I would have a meltdown. That's actually how I first realized there was a pattern. But no matter what I did, I could not control it. And this was shocking to me because I am a great believer in self-control and discipline. I got myself to run a marathon. I was the person in school who always turned in her homework on time. I'd meet my deadlines.

[00:09:27] It was incomprehensible to me that I could not control these outbursts, which were taking such a toll on my life and my loved ones. For a long time, I didn't realize this was abnormal. I just kind of assumed I'm a really bad person. I have poor self-control. So it wasn't until my boyfriend of six years dumped me and then I got into a new relationship with my now husband, who is the most patient person alive. It's actually like kind of frightening how patient he is.

[00:09:57] And about a year in, he was just like, I don't know if I can do this. And all of the issues in my old relationship were no longer present. I could tell it was a better fit with my current husband. And yet I knew that we were still having these fights. And I realized, oh, my God, it's not the relationship. It's me. So I Googled episodes before period. And I came across a description of PMDD. Do you feel severely depressed? Do you deal with anxiety?

[00:10:25] Do you get really angry for seemingly no reason right before your period? You might have PMDD. And I thought, oh, my God, this is me. And I called my doctor. And tell me about that conversation. Tell me about what you said, how you described it, and how your doctor took it all in and responded. I was terrified. I thought my doctor was going to say, you're just a bad person. You're crazy and you're looking for an excuse to behave badly. It was actually incredibly affirming.

[00:10:54] She just listened to me and she said, you sound like a wonderful person. I can't believe you've been suffering for this long. We're going to get you help. How long did it take you to get like a formal diagnosis? So formal diagnosis is kind of tricky. Technically, for a formal diagnosis, you need to track PMDD symptoms for two months. My doctor was like, I take your word for it. I had like years of like, this is when I fought with my partner and this is when my period was. And she's like, I'm not going to make you do two months. Like, let's get you help right now.

[00:11:23] When I was writing my book, I had enough people questioning what PMDD is that I went back and I did that data tracking myself retroactively. But with my doctor, she just accepted that I had PMDD, which I'm actually deeply grateful for. Because given that we're talking about a cyclical disorder, it will take about a month to see if your treatment is working. You have to wait per cycle. And if you make adjustments, then you wait for another cycle. So it ended up taking a year to figure out what worked. Yeah.

[00:11:54] And actually, let's talk about treatment a little bit there. You know, hard enough to sort of figure out the diagnosis and then treatment, which you think, OK, I know what the problem is. There are solutions out there. Let's just match problem to solution. Not the case. Right. So tell me a little bit about why treating yourself, why the treatment for PMDD was so complex. Sure. So there's a couple first line options.

[00:12:20] One is birth control, because essentially PMDD is caused by people reacting poorly to the change in hormones. So typically you ovulate and then your hormone levels change. And most people, it tends to have a calming effect. But for people with PMDD, they kind of have the opposite. They really freak out. So in some ways you can think of it as an allergy to hormonal changes. So birth control then helps with stabilizing that, right? Or secondly, there's also the option of antidepressants.

[00:12:50] And then as sort of your last line, there's either suppressing ovulation through chemical menopause or a surgery to remove your ovaries. I was very resistant to SSRIs at first. SSRIs, selective serotonin reuptake inhibitors, also known as antidepressants, like fluoxetine, which is marketed as Prozac or Paxil. And my doctor was like, that's okay. Let's put you on birth control.

[00:13:18] The FDA has only approved one birth control to treat PMDD. So I took it that it is a very reasonable thing for my doctor to put me on. Unfortunately, it made my symptoms worse. So the issue is PMDD is still widely understudied. There was a new paper that came out recently with a theory that we have different hormonal sensitivities. So some people might be sensitive to progesterone increasing during their cycle.

[00:13:47] Some people might actually be sensitive to estrogen increasing. Some people might be sensitive to estrogen decreasing. And some people might have a combination of some of these things. And that can affect how you react to birth control. So I suspect that I had some sort of sensitivity that birth control reacted very poorly with. But as of yet, doctors are not really testing what do you have. We don't even have an understanding of which distinct types of PMDD there are.

[00:14:16] So it's kind of a one-size-fits-all. In my case, it was really, really bad. I went from I barely have control of myself to I don't have any control. What happened next then? You went to your doctor. You said this birth control is a step worse, not a step better. What happened next? So she put me on a different one. That one was great. Well, it was great in that it wiped out everything. I was so calm and so zen.

[00:14:45] But I also ate everything in the fridge. I was constantly hungry and my libido died completely. And then I was just like, OK, I need something else. A little too young to be at the stage where I'm like, no one ever touched me again. With every change of treatment, you're doing something to your body and your body's having to go through that. Where did you land with that, with treatment? I actually ended up on SSRI.

[00:15:09] So after the second birth control, I guess the powerful thing about trying these different treatments and unlocking different selves was I could see that I had options for different qualities of life. And I did want the calmness that the second birth control had unlocked. I just also wanted to be able to hug my husband and have a physical life with him. That's where I was like, all right, I'll try SSRIs. And that happened to be a good, happy medium for me. And it was more like kind of leashing the anger.

[00:15:38] So I could still hear it in my head sometimes like a barking dog as opposed to like no barking dog at all. I felt like I could just move on with my life. What a brilliant analogy. That's great. I was thinking it's almost like turning the volume up too far, coming down too low. And now trying to figure out sort of what's unacceptable in between, right? Exactly. I think we have all these things about philosophers saying like, oh, you can be anyone you want. It's all about willpower.

[00:16:05] Sometimes your biology has a huge impact on who you are. The beautiful thing about living in our current age is we have options for adjusting some of those biological dials. You talk in the book about a couple of major relationships and the impact on your partner and on the relationship. And I'm just wondering what you've learned and how you can reflect about relationships in this journey that you've been on.

[00:16:34] Like in the book as well, there's this idea of being a monster, but not a full-time monster, like a part-time monster, right? And what the impact of being a part-time monster is on being a partner, on having a partner. What did you learn about relationships, about yourself as a partner through this journey? Such a good question, Golda. I spent so much time thinking about it.

[00:17:00] I'm also going to get Shaleen Gupta, part-time monster, printed out on my business card, handed out to people. I love it. Yeah. Sometimes people ask me, do you ever think you could have made it work with your ex if you had known about PMDD earlier, if you'd gotten treated? And, you know, I don't actually spend a whole lot of time thinking about that because maybe, sure.

[00:17:23] But we both met when we were fairly young, when there were a lot of things about us that worked, but there were some fundamental incompatibilities that went really deep. And I don't think I even realized how much harder it made our relationship until I met my husband, where we're just more in line. And so there are ways in which I'm so grateful I got a chance to meet my husband because I was never going to leave my previous partner. We both really wanted to make it work.

[00:17:51] Ultimately, yeah, it was the PMDD that drove us apart. But I think even without the PMDD, what would have happened is some of these deeper incompatibilities would have taken maybe a longer time to surface. What happens is, you know, I think in a society where if you're somebody who's a people pleaser, especially if you're a woman, it can be really hard to stand up for your needs, even to yourself, to just articulate, like, I need this thing.

[00:18:16] Or this small thing that's really bothering me is something that's actually worth speaking up about. And over the years, as that builds up, you can watch your life turn into this thing that you've lost control of that isn't what you wanted. On the one hand, PMDD has been really, really hard. I would never wish it upon anyone.

[00:18:35] On the other hand, I've watched friends who have that same sort of personality type that I do, which is very conflict-averse, you know, a tendency to put other people first and dismiss your own needs. And they didn't have the valve of every month waking up to this anger or depression or anxiety of, you know what, that thing that happened, I'm not okay with it. Or this thing that I've agreed to do, I'm deeply unhappy and I can't take it anymore.

[00:19:04] And I feel like in some ways, PMDD forced me to build a life around things that I really cared about and I was really happy about and to not tolerate things that I didn't want to. And it's a complicated thing because it came with a big price. But I have a career that I love. I have a relationship with someone who I feel deeply suited to. And it's because every month I had to really fight to keep all of these things.

[00:19:33] So I'm fascinated by how this route to recognition was determined by two groups of people in the story that you tell, psychiatrists and feminists. I had all the feels, actually, just with the labels of these two groups, right? So tell me a little bit about the two camps and the way you characterize them. Yeah, so a real quick history in how PMDD became an official diagnosis for psychiatrists and clinicians.

[00:20:00] Right around the 1960s, we get this researcher, Katrina Dalton, who starts conducting experiments and realizing that there is a small group of people who are really suffering right before their periods. So she decides to call it PMS. She studies schoolgirls and she finds out that how they behave, how tidy they are, their grades, how much they follow the rules changes depending on where they are in their cycle. But it changes differently for different people. Some people get tidier. Some people get worse. Some people's grades go up.

[00:20:29] Some people's grades go down depending on how many days out there are before their period. So all she can really see is, like, their differences. So she decides to call this thing PMS, premenstrual syndrome. And she actually writes that she thinks it's an inaccurate name because these changes are all throughout the cycle. Like, we see changes during ovulation as well. And then she starts really focusing on the group of people who kind of spiral out of control right before their periods, particularly criminals.

[00:21:00] And she ends up being an expert in a few major criminal cases where women are essentially have committed crimes. I think it was murders right before their periods. And she's able to show that on treatment, all of these behaviors disappear. And this gets thrust into the medical community, into the media spotlight. And all of a sudden, people are talking about PMS. Oh, my God, what is it? Are women going crazy? Should this be treated? Should we get help?

[00:21:24] So a small group of psychiatrists in the U.S. sits down and they're like, you know, this is really awful. And we should figure out a way to make this an official diagnosis in the DSM and get these people help. The DSM is the Diagnostic and Statistical Manual of Mental Disorders. It is the main reference guide used by mental health professionals in the U.S. Now, here's where it gets confusing.

[00:21:50] As it is with any disorder, there's a way in which we kind of need to define what is the cutoff? Like, what is the difference between PMS versus PMDD? And this is really nascent. We're early on in this discussion. So experts are debating. They don't really have data sets. They're getting interviewed by the media and being asked, you know, how many people have this? And some experts are like 90% of women, which is true. 90% of women have some changes right around their cycle.

[00:22:18] But now when we're talking about PMDD, which is the really severe changes, it's about 3% to 8%. But the media conflates this because experts are conflating it and saying different things. And suddenly PMS means, oh my God, women are crazy before their periods. This is the 1980s. We also have the feminist movement and there's a real culture clash going on where feminists are fighting for rights.

[00:22:47] And there's also backlash against how do we feel about women at work, women in power? And so feminists see this debate coming out and they see it also weaponized against them because there are ways in now which sometimes there were stories of female politicians running for power. And the media being like, well, what if she goes all PMS-y and hits the nuclear button?

[00:23:09] And feminists are understandably extremely concerned and say, hey now, this is a medicalization of a natural phenomenon. And this is used to discredit women. And this is wrong. And there's a huge fight between the psychiatrists who want this and the DSM to treat the small group of women who have this. And feminists who are like, this is going to completely undermine all women.

[00:23:37] And this is what actually really tugged at me, right? Because it's built around the idea of the question of how can we do what's in women's interests, basically? And the answers to that same question differ so widely. You talked to a woman called Paula Kaplan. So tell us a little bit about who Paula Kaplan is and what your conversation with her was like.

[00:23:59] So Paula Kaplan is one of the feminists who led the charge against PMDD and was vehemently against its inclusion in the DSM. For years, she spearheaded campaigns saying this is not real. It's a medicalization of people's bodies. And women are being gaslit into believing that they have a problem when they don't. And so I felt enormously privileged. I was able to get an interview with her, the last interview she gave actually before she passed.

[00:24:28] She was phenomenally kind. She was ill at the time, but still got back to me within hours. And I did not realize how ill actually she was, but still extremely sharp and really a force of nature. She almost like self-interviewed herself. Like I barely had room to put in my questions. And I could see through the force of her personality why she was such a great person to advocate for feminists. I wish she was still here today.

[00:24:54] We need people like her fighting for all the things that, you know, there's so many things that are going wrong and the way our rights are being scaled back. And I did ask her about PMDD. And I was just like, what about the small number of women who do have symptoms? And I told her that I did, which was hard to do. I was actually quite ashamed because I so admired Paula Kaplan that I didn't want to disappoint her. She didn't deny my experience at all. She was like, I totally validate that.

[00:25:23] And she's like, why do you think it's PMDD and it's tied to your period? Maybe it's depression. Maybe it's anxiety. And she was so charismatic and so sure of herself that, you know, I hung up the phone and I was just like, oh my God, I've let down the team. Like I'm subscribing to this whole PMDD thing, but, you know, maybe I'm just depressed or anxious. And why am I medicalizing my own body? And then my husband came home and I'm like telling him about this.

[00:25:51] And he was like, no, sweetie, you have PMDD. And then I was like, but what would Paula Kaplan say to me letting my husband define my... It just like went on this tailspin, which is all to say I understand Paula Kaplan's concerns. And, you know, today I still had some people ask me, should we be talking about PMDD? Is this going to hurt women in general? And number one, given the current political climate, I am very afraid that it is going to be used against women.

[00:26:20] I worry about people who have PMDD who want to run for something competitive and that being misunderstood. At the same time, I'm going to say this is the symptom of living in a sexist society. The answer to promoting women's well-being is not suppress information about a real disorder and suppress the avenues to treatment.

[00:26:43] The answer is we need to understand that women deserve to lead happy, healthy lives, that they have a lot to contribute. And when they are happier and healthier, they can do more for the world. We can talk about this all day, but Elon Musk has reportedly said that he has undiagnosed bipolar disorder. Look at how much power he has.

[00:27:06] And let's talk about how, you know, you can examine his career and there's a pattern where he'll have an episode, he'll go into his company and then try to rip everything up and create a disturbance. PMDD is predictable. So if we can make allowances for Elon Musk, we can make allowances for people who have PMDD. Damn straight, yeah.

[00:27:36] What is the most overlooked and how is that inequality felt most deeply, do you think? I think the most overlooked aspect of PMDD is its existence. And then secondly, that it deserves treatment. First of all, there's just a large subset of people who have never heard of PMDD. And then the second is I interviewed a subset of people who did get a diagnosis and didn't want treatment.

[00:28:03] And I found that really interesting because I do think, number one, your body, your choice. But number two, they described so much suffering. Like, I'm at the brink of quitting my job. My partner wants a divorce. I'm spending two weeks of the month isolating myself. Someone walked me through their coping mechanisms. So what do you have to lose by trying birth control or an SSRI if the crystals are not working? It might be worth keeping your career, your marriage.

[00:28:32] Well, listen, thank you so much for allowing me in to your head a little bit in this conversation. Thanks for having me, Golda. It was an honor. Overlooked is here for information and empowerment, but not medical advice. Every person's body is unique. So if you have questions, it is best to speak to your doctor or healthcare provider. We're building a community around women's health so that no one is overlooked.

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[00:29:27] So write to us, hello at overlookedpod.com. Thanks for listening.