Building a Better World for People With PMDD
For one week of every month, I have a very bad time. My back aches so badly I struggle to stand up straight. My mood swings from frantic to bleak. My concentration flags; it’s difficult to send an email. Then, my period starts, and the curse is lifted. I feel OK again.
Like some 1 to 7 percent of menstruating women, I meet the criteria for premenstrual dysphoric disorder, or PMDD. According to the most recent edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), a person with PMDD experiences marked emotional changes — such as sadness, anger, or anxiety — and physical or behavioral changes — such as difficulty concentrating, fatigue, or joint pain — in the week before their period. PMDD can also affect trans men and nonbinary people who menstruate.
When I first heard of PMDD, it was a revelation. Here was a concrete explanation for the pain and stress I was feeling every month. Better yet, there was a simple, effective treatment: common antidepressant drugs called selective serotonin reuptake inhibitors, or SSRIs, which people can be prescribed to take just in the two weeks before their period. Birth control pills, cognitive behavioral therapy, and calcium supplements may also help.
Then I heard about the controversy surrounding the diagnosis. When the American Psychiatric Association added a form of PMDD as a proposed disorder to the diagnostic manual in the 1980s — DSM-III-R — some scholars pushed back. They saw the diagnosis as part of the historical oppression of women, done in the name of mental health. The controversy reared up again as PMDD remained in the 1994 DSM-IV, where it was also listed under “Depressive Disorder Not Otherwise Specified.” Many people who menstruate experience emotional changes during their cycles, so defining it as a mental illness could have serious personal and societal consequences, critics argued. A 2002 Monitor on Psychology article, “Is PMDD real?,” quoted the late psychologist and author Paula Caplan: “Women are supposed to be cheerleaders,” she said. “When a woman is anything but that, she and her family are quick to think something is wrong.”
In the end, the APA weighed these concerns and pushed ahead: PMDD was added to the DSM-5 as an official diagnosis in 2013. But I found the criticism disquieting. Had I embraced a modern hysteria diagnosis? Were the symptoms I experienced even real?
Researchers have looked for hormonal differences between people who experience severe premenstrual distress and people who don’t. In some cases, they’ve found them: A 2021 meta-analysis found that people with PMDD tend to have lower levels of estradiol, a form of estrogen, between ovulation and menstruation. But other studies have shown little to no difference in hormone levels. “There are no biomarkers. There’s no test that can be done which helps identify someone with PMDD,” said Lynsay Matthews, who researches PMDD at University of the West of Scotland.
Instead, to receive treatment, people experiencing premenstrual distress have to monitor their own minds and bodies. PMDD diagnosis is based on a symptom diary, kept over the course of multiple menstrual cycles.
The symptoms recorded in those diaries can be severe. In a 2022 survey, 34 percent of people with PMDD reported a past suicide attempt. Over half reported self-harm. “If someone has suicidal ideation or self-harm, or suicide attempts every month for 30 years, that wouldn’t be described as a normal female response to the menstrual cycle,” Matthews said.
There is strong evidence that SSRIs work for people with PMDD, in ways researchers don’t fully understand. “In some cases, hours after taking an effective SSRI, people can feel a lot better,” Matthews said, referring to PMDD patients. In contrast, people with depression usually need to take SSRIs for weeks before feeling the effects. Researchers know the drug’s mechanism of action is different for PMDD — they just don’t know why. “When people find that out, they find it quite validating that it is a medical condition,” Matthews said.
Tamara Kayali Browne, a bioethicist at Deakin University in Australia, agrees that some people experience serious distress in the week before their period — but disagrees with calling it a mental illness.
“The crux of the problem seems to be that we are in a patriarchal society that treats women very differently and puts a lot of women under a lot of significant, disproportionate stress,” Browne said. That disproportionate stress begins early. Eighty-three percent of a sample of Australian PMDD patients reported trauma in early life. It continues in adulthood. A Swedish survey of 1,239 people with PMDD found that raising children was associated with higher rates of premenstrual distress.
Between ovulation and menstruation, many people experience higher physical and emotional sensitivity. They may feel unwilling or unable to deal with the stressors they tolerate the rest of the month: the screaming baby, the messy partner. “Is it the time of the month where the truth comes out?” Browne suggested. Seen in this light, irritability, anxiety, and low mood are understandable reactions to life stressors, not symptoms of mental illness.
There is a long history of doctors labeling women crazy. There is also a long history of doctors dismissing women’s pain. Debates about premenstrual distress are caught in the middle.
When critics question PMDD and the less severe premenstrual syndrome, it can feel invalidating. “It’s time to stop questioning whether women’s experiences are real, and instead start making them real priorities,” Emily Crockett, who has PMDD, wrote with journalist Julia Belluz in response to an article that suggested PMS is culturally constructed.
At the same time, when left unchecked, casual sexism can seep into the medical discourse around PMDD. Early pharmaceutical advertisements marketing SSRIs for PMDD show how this works in practice. In 2000, Eli Lilly packaged fluoxetine in a pink and purple capsule and branded it Sarafem. Advertisements for the drug featured incapable, unreasonable women; one fights a shopping cart, another bickers with her (male) partner. “Think it’s PMS? Think again. It could be PMDD.” (The Sarafem brand has since been discontinued.)
What if we can question the structural factors that make life harder for women while providing medical support for people who are suffering? Could the critiques lead us to more, not fewer, options for people with PMDD?
Medical interventions can be lifesaving for people with PMDD. But they don’t address a society that places a heavy burden on the shoulders of people assigned female at birth.
Browne compares severe premenstrual distress to a broken leg. “If you have a broken leg, you really do need painkillers because you’re experiencing pain,” she said. “But it’s not going to be helpful in the long term if you don’t deal with whatever the underlying cause is.” In the week before menstruation, the life stressors a person with PMDD deals with the rest of the month can feel unbearable. Those life stressors can and should be addressed alongside conventional medical treatment.
One common stressor is the caregiving load. “Parenting is not only a massive trigger but it’s also the biggest burden or the biggest guilt that comes with having PMDD,” Matthews said. “Not only are you struggling yourself every month, but you also feel as though you’re failing your children every month.” The co-parent can help alleviate this burden. When fathers spend more time with their kids — and doing child-related chores — mothers tend to be less stressed about parenting.
Another stressor is relationship difficulties. The emotional changes that come with the premenstrual phase can make conflict with a partner more likely. They can also prompt the PMDD sufferer’s partner to dismiss those feelings. “Nowadays, a partner might still be inclined to say, ‘wait a minute, I know it’s that time of your month again. You’re just being oversensitive,’” Browne pointed out. Women in relationships with women, who tend to be more understanding of premenstrual change than men, report a more positive experience of the week before their period.
Researchers have done great, necessary work to understand PMDD, work that should continue. How are people who experience premenstrual distress biologically different from people who don’t? Can we find new, more effective drugs to treat that distress?
In the meantime, we need to build a better world for people who experience premenstrual distress. Doctors can prescribe medicine, but managers can make accommodations in the workplace. Co-parents can take on more caregiving responsibility. And partners can provide love and support.
Ciara McLaren (@camclaren) is a writer whose work has appeared in Insider, Mental Floss, and other outlets. She lives with her husband in London.
This article was originally published August 31, 2023 on Undark. Read the original article.
