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Tag: behavioral changes

  • Is This Premenstrual Condition a Mental Illness or Oppression?

    Is This Premenstrual Condition a Mental Illness or Oppression?

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    This article originally appeared in Undark Magazine.

    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 okay 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-TR), 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 can be prescribed for people to take only 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, adding PMDD 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?

    Read: Why are so many women being told their hormones are out of whack?

    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,” says 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 mind and body. 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. More than 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 says.

    There is 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 says, referring to PMDD patients. In contrast, people with depression usually need to take SSRIs for weeks before feeling the effects. Researchers know the drugs’ 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 says.

    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 says. 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 suggests. 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,” the journalists Emily Crockett and Julia Belluz wrote 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 hydrochloride 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.

    Read: Women aren’t just small men

    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 says. “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 says. “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 points 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.

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    Ciara McLaren

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  • The Pregnancy Risk That Doctors Won’t Mention

    The Pregnancy Risk That Doctors Won’t Mention

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    The nonexhaustive list of things women are told to avoid while pregnant includes cat litter, alfalfa sprouts, deli meat, runny egg yolks, pet hamsters, sushi, herbal teas, gardening, brie cheeses, aspirin, meat with even a hint of pink, hot tubs. The chance that any of these will harm the baby is small, but why risk it?

    Yet few doctors in the U.S. tell pregnant women about the risk of catching a ubiquitous virus called cytomegalovirus, or CMV. The name might be obscure, but CMV is the leading infectious cause of birth defects in America—far ahead of toxoplasmosis from cat litter or microbes from hamsters. Bafflingly, the majority of babies infected in the womb are unaffected, but an estimated 400 born with CMV die every year. Thousands more end up with hearing and vision loss, epilepsy, developmental delays, or microcephaly, in which the head and brain are unusually small. Exactly why the virus so dramatically affects some babies but not others is unknown. There is no cure and no vaccine.

    Amanda Devereaux’s younger child, Pippa, was born with CMV, which caused damage to her brain. Pippa is prone to seizures. She could not walk until she was 2 and a half, and she is nonverbal at age 7. “I was just flabbergasted that no one told me about CMV,” says Devereaux, who is now the program director for the National CMV Foundation, which raises awareness of the virus. The nonprofit was founded by parents of children with congenital CMV. “Every single one of them says, ‘Why didn’t I hear about this?’” Devereaux told me.

    One reason that doctors have hesitated to spread the word is that the most obvious way to avoid this virus is to avoid infected toddlers. Symptoms from CMV are usually mild to nonexistent in healthy adults and children. Toddlers, who frequently pick up CMV at day care, can continue shedding the virus in their bodily fluids for months and even years while totally healthy. “I’ve encountered a classroom of 2-year-olds where every single child was shedding CMV,” Robert Pass, a retired pediatrician and longtime CMV researcher at the University of Alabama, told me when we spoke in 2021. (He recently died, at age 81.)

    This creates a common scenario for congenital CMV: A toddler in day care brings CMV home and infects Mom, who is pregnant with a younger sibling. One recent study found that congenital CMV is nearly twice as common in second-born children than in firstborns. Devereaux’s toddler son was in day care when she was pregnant. “I was sharing food with him because he would not finish his breakfast,” she told me. She had no idea that his half-eaten muffin could end up harming her unborn daughter. In hindsight, she says, “I wish I had spent less time worrying about not eating deli meat and more time focused on, Hey I’ve got this toddler at day care. I’m at risk for CMV.”

    CMV is such a tricky virus because few things about it are absolute. A mother cannot avoid her toddler categorically. Most pregnant women infected with CMV do not pass it to their babies. Most infected babies end up just fine. Doctors warn patients against many risks in pregnancy—see the list above—but in this case thousands of parents every year are blindsided by a very common virus. No one has a perfect answer for how to stop it.

    Day cares have been known as hot spots for CMV since at least the 1980s, when Pass, in Alabama, and other researchers in Virginia first began tracking congenital cases back to child-care centers. The virus is rampant in day cares for the same reason that other viruses are rampant in day cares: Young children are born with no immunity, and they aren’t very diligent about avoiding one another’s saliva, urine, snot, and tears, all of which harbor CMV. Of mothers with infected toddlers in day care, a third who have never had the virus catch it within a year. And getting CMV for the first time while pregnant is the riskiest scenario; these so-called primary infections are most likely to result in serious complications for the fetus. But recent research has found that reinfections and reactivations of the virus can lead to congenital CMV too. (CMV remains inside the body forever after the first infection, much like chickenpox, which is caused by a related virus.)

    So eliminating the risk of congenital CMV entirely is impossible. But some CMV experts advocate giving women a short list of actions to reduce their risk during the nine months of pregnancy: Avoid sharing food or utensils with toddlers in day care; kiss them on the top of the head instead of on the mouth; wash your hands frequently, especially after diaper changes; and clean surfaces that come in contact with saliva or urine. A study in Italy found that pregnant women who were taught these measures cut their risk of catching CMV by sixfold. A study in France found that it lowered risk too.

    In the U.S., patients are unlikely to hear this advice from their obstetricians, though. The American College of Obstetricians and Gynecologists doesn’t recommend telling patients about ways to reduce CMV risk. According to ACOG, the evidence that behavioral changes can make a difference—from just a handful of studies—is not strong enough, and the organization sees downsides to the approach. Advice such as not kissing babies and toddlers could harm “a mother’s ability to bond with her children,” and these hygiene recommendations could “falsely reassure patients” about their risk of CMV, Christopher Zahn, ACOG’s interim CEO, said in a statement to The Atlantic.

    The CMV community disagrees. “I think they’re being a bit paternalistic,” says Gail Demmler-Harrison, a pediatric-infectious-diseases doctor at Texas Children’s Hospital. A group of international CMV experts, including Demmler-Harrison, endorsed patient education in a set of consensus recommendations in 2017. Devereaux, with the CMV Foundation, frames it as a matter of choice. It shouldn’t be “somebody else is saying, ‘You can’t handle this information; I’m not going to share that with you,” she told me. Without knowing about CMV, women can’t decide what kind of risk they’re comfortable with or what kind of hygiene changes are too burdensome. “It’s your choice whether you make them or not,” she says. “Having that choice is important.”

    More data on how well these behavioral changes work might be coming soon: Karen Fowler, an epidemiologist at the University of Alabama at Birmingham, is enrolling hundreds of pregnant women in a clinical trial. Only 8 percent of participants had heard of CMV before joining the study, she says. Patients get a short information session about CMV and then 12 weeks of text-message reminders. Importantly, she says, “we’re keeping our message very simple”: Reduce saliva sharing: no eating leftover food, no sharing utensils, and no cleaning a pacifier in your mouth. This simple rule cuts off the most probable routes of transmission. Sure, CMV is also shed in urine, tears, and other bodily fluids—but mothers aren’t routinely putting any of those in their mouth.

    Prevention of CMV ends up the focus of so much attention because once a fetus is infected, the treatment options are not particularly good. The best antiviral against CMV is not considered safe to use during pregnancy, and another antiviral, although safer, is not that potent. After infected babies are born, antiviral therapy can help preserve hearing in those with other moderate to severe symptoms from CMV, but it can’t reverse damage in the brain. And it’s unclear how much antivirals help those with only mild symptoms. When does benefit outweigh risk? “There’s a big gray area,” says Laura Gibson, a pediatric-infectious-diseases doctor at the University of Massachusetts Chan Medical School. For these reasons, policies of whether to screen all newborns vary state to state, even hospital to hospital. Knowledge can be power—but with a virus as confusing as CMV, knowledge of an infection doesn’t always point to an obvious best choice.

    In an ideal world, all of this could be made obsolete with a CMV vaccine. But such a vaccine has proved elusive despite a lot of interest. In the U.S., the Institute of Medicine deemed a CMV vaccine the highest priority around the turn of the millennium, and about two dozen vaccine candidates have been or are being studied. All of the completed clinical trials, though, have failed. “The immunity may look robust in the first month or year, but then it wanes,” Demmler-Harrison says. And even vaccines that elicit some immune response are not necessarily able to elicit one strong enough to protect against CMV infection entirely.

    CMV is such a challenging virus to vaccinate against because it knows our immune system’s tricks. “It’s evolved with humans for millions of years,” Gibson says. “It knows how to get around and live with our immune system.” Our immune system is never able to eliminate the virus, which emerges occasionally from our cells to replicate and try to find another host. And so a vaccine that completely protects against CMV would need to prompt our immune system to do something it cannot naturally do. It would need to be better than our immune system. “As time goes on, I think fewer and fewer people are thinking that might work,” Gibson says. But a vaccine doesn’t have to protect against all infections to be useful. Because first infections are the riskiest for fetuses, being vaccinated could still reduce risk of congenital CMV.

    Whom to vaccinate is another complicated question to answer for CMV. We could vaccinate all toddlers, as we do against rubella, which is also most dangerous when passed from mother to fetus. This has the potential advantage of promoting widespread immunity that tamps down circulation of CMV, period. But the virus doesn’t actually harm toddlers much, and immunity could wane by the time they grow up to childbearing age. Or we could vaccinate teenagers, as we do against meningococcal disease, but teens are more likely to miss vaccines and again, immunity could wane too soon. So what about all pregnant women? By the time someone shows up at the doctor pregnant, it’s probably too late to protect during CMV’s highest risk period, in the first trimester. A better understanding of CMV immunity and spread could help scientists decide on the best strategy. Gibson is conducting a study (funded by Moderna, which is testing a CMV-vaccine candidate) on how the virus spreads and what kinds of immune responses are correlated with shedding.

    Until a vaccine is developed—should it happen at all—the only way to prevent CMV infection is the very old-tech method of avoiding bodily fluids. It’s imperfect. Its exact effectiveness is hard to quantify. Some people might not find it worthwhile, given the small absolute risk of CMV in any single pregnancy. There are, after all, already so many things to worry about when expecting a baby. Yet another one? Or, you might think of it, what’s one more?

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    Sarah Zhang

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