• Research suggests that roughly 1 in 20 pregnant women are suffering from an eating disorder(ED).
• Physical and emotional changes during pregnancy – and the postpartum period – can exacerbate these already life-threatening illnesses.
• Many choose to shoulder their condition in silence, fearing judgment if they tell family, friends, or doctors.

---

Warning: This story contains descriptions of EDs that may be triggering for those in recovery or currently struggling with one of the disorders.

By some measures, Jaquie Keith had a normal, uneventful pregnancy. She had no serious complications. She gained the requisite amount of weight and her belly swelled right on schedule. Towards the end, she could feel her son – who’d eventually arrive a week before his due date, perfect and healthy – move inside her.

Deep down, though, her relationship to her changing body was fraught.

Since high school, Keith had been battling bulimia. The eating disorder did get slightly better once she became pregnant, as Keith purged her meals less frequently. But throughout those nine months, her bulimia remained active.

“You tell yourself one second, ‘I need to feed my baby, I need to give him calories.’ But at the same time your eating disorder is telling you [that] you’re going to be morbidly obese, you’re never going to lose the weight again,” Keith said. “Your eating disorder just fights you every step of the way.”

Pregnancy is a time of immense change in the human body. For people with eating disorders (EDs for short) – a group of illnesses linked by fixations on weight, food, and body size – these changes can spark profound distress.

While many ED patients improve during pregnancy, others don’t. In fact, the experience of pregnancy may even prompt the relapse of dormant disorder in women who’ve achieved recovery.

And, as INSIDER learned in interviews with Keith and other women who suffered ED symptoms while pregnant, many of these patients struggle in secret, fearing judgment if they disclose their EDs to friends, family, and doctors.

“This is a very complex problem,” Dr. Dorothy Smok, an OB-GYN and maternal-fetal medicine specialist at Columbia University Medical Center, told INSIDER. “These women are suffering. And this is one of the hardest areas to treat, I think, in medicine.”

EDs often strike women in their childbearing years

Though EDs occur in men and in people of all ages, they happen more frequently in young women. Women in their teens and early 20s are most at risk for anorexia and bulimia, according to the US Department of Health and Human Services Office on Women’s Health. Binge eating disorder(BED) is more common in women, too, and is typically diagnosed in the mid to late 20s.

For some women, then, the highest window of ED risk overlaps with the childbearing years.

It may seem unlikely or even impossible that a woman with an eating disorder can get pregnant, especially given the popular misconception that all ED patients become so thin they stop ovulating and menstruating. The truth is that ED suffers may be underweight, normal weight, or overweight – and though EDs often negatively impact fertility, even patients with erratic menstrual cycles can become pregnant.

“I like to tell my patients, eggs happen,” internist Dr. Jen Gaudiani, medical director at the Gaudiani Clinic and author of Sick Enough: A Guide to the Medical Complications of Eating Disorders, told INSIDER. “Even if somebody hasn’t had a period in a couple of months, if they are having sex with a partner of the opposite sex in an unprotected way, there is always the possibility that they will just happen to ovulate and get pregnant.”

EDs during pregnancy are surprisingly common

In general, research shows most ED patients actually improve as they transition to motherhood, Gaudiani explained.

“Oftentimes [patients] say, ‘I can do these resting and nourishing behaviours for my baby even if I didn’t used to be able to do them for myself,” she said.

This isn’t always the case, of course. Sometimes an ED stays the same, worsens, or returns after a period of recovery, Dr. Margo Maine, a clinical psychologist specializing in ED treatment, told INSIDER.

Researchers at the Norwegian Institute of Public Health studied ED rates in a group of more than 77,000 pregnant women, as part of the long-term, large-scale Norwegian Mother and Child Cohort Study. In 2013, the authors reported that the prevalence of EDs during pregnancy was “alarmingly high.”

In their sample, one in every 21 women had an ED while pregnant. Most were cases of BED, a condition characterised by recurring episodes of binge eating followed by shame, distress, and guilt. It’s also the most common ED in the general US population, according to the National Eating Disorders Association (NEDA).

The prevalence could be even higher, the study authors wrote, because the patient questionnaire used to screen participants for EDs may have missed cases of Eating Disorder Not Otherwise Specified (EDNOS, since renamed OSFED), a category created for patients who have serious illnesses but don’t meet the strict diagnostic criteria for anorexia or bulimia.

And some mothers-to-be may even develop an ED for the first time during pregnancy. In the same study, for example, 1.7% of the women developed a new case of BED while pregnant.

The physical changes of pregnancy can be triggering

For women shouldering active ED symptoms while carrying a child, pregnancy presents an array of triggering changes and symptoms.

There’s weight gain, for one. A normal-weight woman should gain between 25 and 35 pounds while pregnant, according to the American College of Obstetricians and Gynecologists (ACOG). But fear of weight gain figures prominently in many eating disorders.

Intense fear of gaining is one of the criteria used to diagnose anorexia. Those with bulimia attempt to prevent weight gain with “compensatory” behaviours, like self-induced vomiting, laxative use, and excessive exercise.

For an ED patient, knowing pregnancy weight gain is healthy can’t always erase the fear of a rising number on the scale.

“The weight gain started off slow but seeing the numbers climbing was definitely unsettling,” Megan, 28, a mother of one who’s recovered from anorexia but experienced a relapse during pregnancy, told INSIDER. (She and two other women interviewed by INSIDER asked to be identified by their first names only to protect their privacy.)

Katy, now 35, is a mother of one who was long ago diagnosed with EDNOS. Though Katy told INSIDER she hasn’t engaged in active ED behaviours for years, she found that bloating during the earliest days of pregnancy provoked ED-related anxieties.

“I felt like I didn’t look ‘pregnant,’ just fat. I was desperately trying to hide the bloat that I felt was so obvious. I was so afraid people would think I was just gaining weight,” she said.

And Jo, a mother of two who had anorexia relapses in both pregnancies, said extreme morning sickness brought her back to an “anorexic headspace,” even though she was seeing a therapist throughout her first pregnancy.

“Feeling nauseous all the time was very triggering,” she said. “I didn’t want to throw up, so it seemed like was a good idea to just not eat.”

Pregnancy also brings psychological challenges for ED sufferers

Being pregnant while having an ED is a lot like a tug of war. At least, that’s how researchers described the experience in a 2018 paper that reviewed 11 previous studies on EDs during pregnancy.

“Women experienced a ‘tug-of-war’ struggle to manage the needs of the eating disorder and the unborn child, with the two desires often conflicting during the course of the pregnancy,” the authors wrote. “Participants intensely desired both outcomes: their eating disorder behaviour and ‘healthy’ eating for a healthy baby.”

The concept of EDs having “needs” is sometimes hard for non-ED sufferers to grasp, according toDr. Tom Hildebrandt, chief of the Division of Eating & Weight Disorders at the Mount Sinai Health System in New York.

“It’s really almost like a parasite,” he told INSIDER. “And the most seductive part of that parasite is that it speaks to you in your own voice. So you believe it, because it’s a thought using your own voice that says, ‘I need to be thinner,’ or, ‘I shouldn’t eat that.’ That parasite’s sole purpose is to get you to spend time, energy, and effort on controlling your shape and weight or your food intake.”

Women with EDs may also feel consumed by performance-related worries, Maine explained. They may worry whether they will get through gestation and delivery, or about how they will do as a mother.

“It’s not just about their bodies,” Maine said. “[ED patients] tend to be so perfectionistic and so hard on themselves. That adds another layer of emotional stress that is pretty significant.”

Then there are the external pressures, like comments from strangers. Pregnant bodies are magnets for unsolicited commentary – it’s been documented in pages and pages and pages of personal essays written by mothers.

“People say a lot about your weight – you look so much further along than you really are, you’ve gotten so big, you finally popped out, you’re showing so much, your clothes are getting tight now,” Keith said. “It seems so benign and people are happy for you, but if … somebody has an eating disorder it’s something that is so detrimental to [their] emotional state.”

A sense of lost control over diet and weight can also be a powerful trigger for pregnant ED patients, Hildebrandt said.

“The idea that you’re now responsible for another life can really stimulate that idea that you’re out of control,” he said. “Throw on top of it hormones that you’re not used to and body changes that you’re not used to. That control or feeling like they lost it has huge implications for how they manage.”

The postpartum period – and pressure to “bounce back” – can hit ED sufferers just as hard

Jo still has vivid memories of waking up after giving birth to each of her daughters. She was exhausted and starving, but at first, she couldn’t bring herself to eat.

“I would look at the hospital menu for breakfast feeling overwhelmed, wanting to eat everything on the menu but being so worried about losing the baby weight immediately that I couldn’t order anything,” she said.

Jo had entered the postpartum period – a stage that’s physically and emotionally taxing for all new mothers but especially difficult for the ones with EDs.

First, there’s food. New mothers need nourishment as they recover from the hard work of childbirth. Those who choose to breastfeed need even more: Nursing mothers need 450 to 500 extra calories per day to support milk production, according to the ACOG. This can be complicated, of course, when you have a warped relationship with food.

“You have an eating disorder so you don’t want to overeat, but people keep telling you [that] you need to get all these calories,” Keith, who breastfed her son, recalled. “It’s not just as simple as breakfast, lunch, and dinner for some people. For some people food is literally the enemy.”

Research suggests that women with EDs are at a heightened riskfor postpartum depression, too, though it’s worth noting that depression and anxiety frequently occur in tandem with EDs, even in the absence of pregnancy.

New mothers must also contend with pressure to “bounce back” to a pre-baby weight – a pressure fuelled in part by intense media focus on famous mothers, as Forbes noted in 2012.

“Having treated eating disorders for 35 years or so, pregnancy always brought up issues for women who had them,” Maine said. “However I would say in the past 10 years the issues are exponentially exaggerated because of the incredible effect of media images.”

Unsurprisingly, these images can have an outsize effect on postpartum ED sufferers.

“You’re expected to love and speak positively of your postpartum body because it’s amazing what it did,” Megan said. “But you’re also expected to lose the baby weight quickly. Other mums, doctors, even strangers put this goal on you.”

“After my daughter was born, I had been so scared of not losing the baby weight but I was passively back to my pre-pregnancy weight within a week and a half,” Katy said. “That was … the ED rearing its head again and telling me my worth was based on how quickly I lost that weight.”

The early years of motherhood are ripe for relapse, too

Young motherhood can have another pitfall for patients with an ED history. The women whose EDs improve during pregnancy may believe they no longer need support and may stop seeking therapy, possibly leaving them vulnerable to relapse, Gaudiani explained.

She pointed again to the Norwegian Mother and Child Cohort Study, which followed women after they gave birth to see if eating disorders persisted. Three years after delivery, 40% of patients with anorexia and 70% of patients with bulimia had relapsed.

“The data is very grim,” Gaudiani said, especially when it comes to anorexia. “It is the mental illness with the highest mortality in the entire book. So that’s a mum of a 3-year-old who now has relapsed into the disease that has the highest risk of killing her of any mental illness.”

Jo, for instance, noticed that pregnancy changed her relationship with food at first – it gave her the sudden feeling that she deserved to eat. But when she became pregnant the second time, things changed.

“During my second pregnancy, I was three years removed from any type of therapy. Though I was committed to gaining the correct amount of weight during my pregnancy for the health of my baby, I was very aware of every calorie I consumed,” she said. “The stress of being sick, pregnant, and trying to raise a toddler was overwhelming. Instead of seeking help, I relapsed.”

Pregnant and postpartum women with EDs may weather their illnesses alone, fearing judgment from others

Keith’s parents knew about her bulimia, but she didn’t tell them much about her ED symptoms during pregnancy.

“I never spoke to them at all about how my eating was going. If they asked me I just said [I was] fine,” she said. “I feel like if they even thought that I was struggling or considering purging or considering not eating, the shame would just be too much.”

EDs are mental illnesses that no asks to get. Not everyone understands that. In an Ipsos poll conducted earlier this year, 39% of respondents believed that EDs are a cry for attention or a person “going through a phase.” 13% viewed EDs as a lifestyle choice linked to vanity.

It is not hard to imagine how pregnant women and young mothers with EDs might be judged – and why they often prefer silence.

“Very, very few people know it’s ever been a struggle of mine,” Katy said. “Just like any personal struggle, it’s easily magnified when we become parents.”

“The overwhelming perception seems to be that we are choosing to do this to ourselves,” Jo said. She described her current health as stable but still struggles with disordered thoughts and “small relapses” in times of stress.

“There is very little sympathy to be found,” she added. “No one feels sorry for the soccer mum who can’t drive her kids to practice because she faints after fasting for two days.”

They may not tell their doctors about their EDs – but doctors might not ask, either

“People with eating disorders are really misunderstood by most medical professionals and end up feeling usually more shamed worse about themselves and less understood after medical visits,” Maine said. “And most women will not tell a doctor of any sort that they have an eating disorder.”

Some scientific evidence also suggests this is true. In a 2018 study that surveyed pregnant or post-natal women with ED history, only 22% said a health professional was aware of their disorder.

This wasn’t the case for every woman INSIDER interviewed. Katy, for example, said she had a “supportive and compassionate” OB-GYN who knew about her ED history. But others deliberately avoided the topic.

“I did not [tell my doctor] because I was afraid they would think poorly of me and I really wanted to have an easy relationship with my doctor,” Megan said. “While she was great, she was also old fashioned and I wasn’t sure what to even expect divulging that.”

Because patients may be reluctant to disclose EDs, it’s even more important that doctors screen for them. But not all medical professionals may do so.

A 2009 survey of OB-GYNs found that, while almost 91% believed EDs could negatively impact pregnancy, less than half assessed ED history, body image concerns, or bingeing and purging behaviours with their patients. Only about half the doctors believed that ED assessment fell within their scope of responsibility.

“Eating disorders are usually not well understood by the public, and I think the medical community mirrors that, frankly,” Hildebrandt said. “Doctors don’t ask about them and maybe they don’t know how to ask about them or in some cases maybe they’re afraid to ask about them. I think that kind of culture breeds a lot of distress.”

ED patients starting families need multi-faceted care

Both Smok and Hildebrandt stressed that ED patients will get the best pregnancy care with a collaborative team including mental health professionals, OB-GYNs, primary care doctors, and in some cases, dietitians.

An ED can negatively affect the health of a mother-to-be, of course – EDs can have physical effects in every organ system in the body, according to the NEDA. During pregnancy, though, the disorders may present additional health risks for a growing baby, Gaudiani explained.

Anorexic women may be more likely to have lower-weight babies or premature delivery. Women with BED appear to have higher miscarriage rates than the general population and may also have higher-weight babies, which can result in risky deliveries. And in bulimia, binge-purge cycles may cause electrolyte imbalances that risk fetal loss, Gaudiani added.

But not every pregnancy conceived in the midst of an ED will end in tragedy. Outcomes depend on a woman’s weight, nutritional status, and the type of support she receives from doctors, Smok explained.

“The key thing is to approach a patient compassionately without bias and be there to guide her in the right direction,” Smok said. “A healthy pregnancy outcome is possible, and a multidisciplinary approach will help.”

Gaudiani also encouraged women with EDs to use pregnancy and a launchpad for recovery.

“The process of getting pregnant, staying pregnant, delivering a baby, and then being a mum, are all far and away best done within the construct of recovery, not illness,” she said.

EDs sufferers can get better – but it’s not always simple

EDs are not hopeless cases. They can be treated and many patients get completely better. But recovery may be a long process, and even the patients considered “recovered” may need to take ongoing steps to prevent relapse, according to NEDA.

In short: There is no instant fix for EDs. They do not always stop, or even pause, for parenthood.

“It’s easy for us to say, ‘I would never make a choice to get pregnant or to be a mother in the context of an eating disorder. How dare she?'” Gaudiani said. “But oftentimes we are in a more fortunate position that someone else didn’t have.”

Jaquie Keith didn’t ask to get bulimia in high school. She didn’t ask for it to worsen throughout college. She never wanted those parasitic thoughts to linger during her pregnancy. But there was no magic solution to make them stop.

“People just don’t understand that it’s not just as simple as you’re going to be fixed from the second you get pregnant,” she said. [An ED is] not something you can just turn off. It’s something that I would have given anything to just turn off, even if it was just those nine months. But it’s not that simple.”

If you or someone you know is struggling with an eating disorder, you can call NEDA’s Helpline(1-800-931-2237) on weekdays for support, resources, and information about treatment options. In crisis situations, NEDA offers 24/7 support – just text “NEDA” to 741-741.

Visit INSIDER’s homepage for more.

Follow Business Insider Australia on Facebook, Twitter, LinkedIn, and Instagram.