Photo: Maggie Baumann at 9 months pregnant with her first baby Christine, 1986 (left). Baumann at 9 months pregnant with her daughter Whitney. Christine is holding her hand, 1987 (middle). Baumann at 9 months pregnant with her daughter Whitney, 1987 (right).
Maggie Baumann knew she had to get help after one of her daughters began having seizures as a newborn. But it took her a longer time to realize that not only did her daughter need help — Baumann herself needed to treat her ongoing eating disorder which caused the seizures.
This eating disorder has been coined as "pregorexia."
“I didn’t really acknowledge I had an eating disorder,” she said of her past. “I was one of those people that love to be in denial.”
Baumann, a 52-year-old certified eating disorder and trauma therapist, has a private practice in Newport Beach, Calif., and she especially enjoys helping moms and pregnant women with eating disorders.
This is partly because she herself has had to experience the struggles of having the eating disorder pregorexia during pregnancy and motherhood.
What is Pregorexia?
According to Mayo Clinic, pregorexia "refers to a woman's drive to control pregnancy weight gain through extreme dieting and exercise. "
However, it’s not considered an official eating disorder, as it’s not recognized by the Diagnostic and Statistical Manual of Mental Disorders (DSM-5).
Jessica Setnick, a registered dietitian, author of “The ADA Pocket Guide to Eating Disorders” and senior fellow at Remuda Ranch at The Meadows (an eating disorder treatment center), believes pregorexia can actually start before a woman gets pregnant and can continue after her baby is born.
“I consider it the fear of gaining ‘too much’ weight during pregnancy that leads to restrictive eating, too much exercise, or both,” Setnick said.
There are three common symptoms of pregorexia, according to Setnick:
Setnick has known clients who were motivated to face their eating issues and strived to recover when they became pregnant. However, just as many patients were not motivated during pregnancy.
“[They] instead felt fear, guilt, worry and shame about the weight gain, body changes and increased eating related to pregnancy,” Setnick said. “Reaching a certain weight, even though it is a healthy weight appropriate for the pregnancy, can trigger someone if they fear that specific weight.”
For Baumann, pregnancy actually seemed to trigger the eating disorder anorexia. With her first pregnancy, she was able to gain the appropriate amount of weight and followed her doctor’s instructions. However, the process was uncomfortable for her.
“In my head it was very, very difficult for me because I was battling the thoughts, but I kind of didn’t do the behaviors,” she said, referring to disordered eating behaviors.
She added that for many women with eating disorders, big changes and transitions in life, such as pregnancy, college and adolescence, can serve as triggers.
However, she recognizes that many mothers she’s treated with eating disorders are able to take care of their babies and allow themselves to eat regularly.
“Some people are able to kind of let go of their eating disorder because they can think, ‘Oh well, I have a baby in me, and I want to take care of the baby and I want to feed the baby’” Baumann said.
Either way, it doesn’t help when even some medical professionals don’t know how to handle the sensitive topic about having a healthy weight during pregnancy.
“I have recently heard of women who are overweight being told to lose weight during their pregnancies. That is doctor-induced pregorexia,” Setnick added.
“Doctors telling patients to lose weight during pregnancy or that it’s OK not to gain weight are doing their patients a terrible disservice.”
Baumann's Story: Starving for Two
"Everything that I’m telling you right now, I never told a soul," Baumann said. "No one ever knew what was going on ... it was before people were really talking about eating disorders so much ... especially women."
Although Baumann’s two daughters are now in their late 20s, she started struggling with disordered eating during her first pregnancy, which eventually led to a full-blown eating disorder by her second pregnancy.
She was an athlete so she was used to being thin and having a rigorous exercise routine. With her second pregnancy, her eating disorder took over, and she rationalized with herself that it would be fine to go back into her old rigorous routine, where she wasn’t eating enough and was over-exercising.
"I had like a thing that just switched in my head and I thought, well I’m going to do what I always did," Baumann said.
She almost miscarried her second daughter Whitney at 11 weeks, which shook her up for a while because she thought she was going to lose her. However, as soon as the bleeding stopped, the eating disorder switch turned back on and she went back to her same routine again.
She never told her doctor what was going on, and he never even guessed, even after Whitney was diagnosed with intrauterine growth restriction (IUGR). Basically, this meant that her baby was not getting enough nutrients.
"And [the doctor] said you have to stop exercising and you have to eat more," Baumann said. "And I heard that, and of course I went home, never told my husband, nothing. He had no idea."
Through the fog of the eating disorder, she thought this meant not going to the gym, but she still exercised during different errands, such as running while pushing her other daughter, Christine, in a stroller up hills.
"No one knew anything, except for people were telling me gosh you’re really small," Baumann said. "But then I was also getting many compliments on how did you stay so small, and you look so good, and that was kind of feeding the stupid eating disorder."
She had to have a Cesarean section with both of her children, but with Whitney she even remembers that as she was being rolled into the operating room, two nurses complimented her on how small she was.
"In my mind I thought OK I did it," Baumann said. "I was able to control this."
About four months later, Baumann's daughter Whitney began to have seizures, and her head went back and her eyes rolled back. At first, she didn’t know what was happening and thought her daughter was just happy to see her, but then Whitney started doing it almost 20 times a day.
When Baumann took her daughter to the doctor, she was referred to a neurologist, who talked about putting Whitney on medication for epilepsy. However, she didn’t feel comfortable putting her four-month-old daughter on medication.
While reading a pamphlet on epilepsy, she discovered that malnutrition in the womb can lead to this issue in babies.
"And that was really the first time that it really clicked in me that I had done something," Baumann said. "And I remember after that point ... my anorexia got really bad, because I was like ‘I’ve done this to my child.’"
After testing, it was discovered that the seizures weren’t harming her daughter’s brain, and most likely her brain just didn’t have enough nutrients at the time, which led to the misfiring for a few months.
Luckily, one day soon after, Whitney just stopped having seizures.
Pregorexia: A Disconnect From Pregnancy
Baumann believes her difficult time during her pregnancy was partly because of past sexual trauma during childhood, which made her disconnected to her body and the baby inside of it. She also experienced neglect and abuse during her first six months of life before she was adopted.
She felt that she had a dissociative piece that came with her eating disorder, because she kept telling herself that she wasn’t pregnant. In fact, she tried her best to hide her pregnancies, and even refused to buy maternity clothes.
"So really after they were out of my body, that’s when the connection started," she said.
However, she did have difficulty with breastfeeding.
"A lot of moms that have eating disorders have difficulty with the attachment part of it, and breastfeeding was again something that was very connected to my sexual trauma, but I didn’t understand why [at the time]," Baumann said.
She added that having an eating disorder is not really about the weight, scale or what you’re eating.
"That’s what you focus on to control ... you focus on that so you don’t have to address what’s underneath," Baumann said.
Confronting Pregorexia: Baumann's Recovery
Baumann didn’t go into treatment for her eating disorder until her kids were around 10 and 11, and she thought she had recovered at that time.
The first time she shared her story was through a blog on a big parenting website at the time, Momlogic.com (no longer in existence). Her kids were in their early 20s at the time.
Shortly after, the blog post became viral in 2009, and multiple newspapers picked up the story to her surprise.
She believes she was one of the first women to come out in public with “pregorexia.” Soon after reading all the scathing comments telling her she should be sterilized and that her kids should be taken away, she realized she had not fully recovered from her eating disorder.
"It did really stop me in my tracks, because I kind of thought I had done recovery on that, and I realized I had not done enough on it," Baumann said. "I went back into therapy after that because ... the impact of what I did on my kids, I really didn’t get it."
Lifting the Shame for Mothers
Baumann’s experiences have really led her to want to help all the other mothers with eating disorders in hiding.
"I know they’re out there, but they’re hidden," Baumann said. "They don’t want to be seen, because what’s a person going to say?
"You’re a mom with an eating disorder or you’re pregnant with an eating disorder," she added. "They’re going to say what’s wrong with you. You should be eating for your child."
She contacted Timberline Knolls, a residential treatment center, to partner with them and facilitate a support group for pregnant women and mothers with eating disorders.
Baumann tried starting one in her office in Newport Beach, but she was getting calls from all over the state and decided to work with a bigger center to help more women. The support group is web-based and free. She decided to call it Lift the Shame.
"That’s why I called the group Lift the Shame, because you hold so much shame that you’re doing this to your ... child," Baumann said.
Currently there are over 70 women worldwide who are in the group. Some are in other countries besides the United States, such as Australia, Finland and Canada.
When the group meets, Baumann brings up safe topics for the women to discuss, avoiding triggering topics such as food and weight, and they can talk on audio and a chat board. They only use their first names for privacy, and only she is visible.
Baumann focuses more on topics like how the women are viewing being pregnant and having this eating disorder, how they’re doing emotionally, how they can work on their connection with the baby and others, and how they’re feeding the baby.
She encourages women in the group to start attaching to their babies right away, while they’re still pregnant. For example, she suggests starting a baby book that includes milestones like their first ultrasound.
Also, she tells the mothers in her group to sit down for a couple minutes every day and talk to the baby and play music for the baby.
"Start bonding with this baby, because the more they bond with the baby, the more the ability they will have to want to ... make the right choice," Baumann added.
She is trying to help other women avoid the experience she went through, where she had no bonding with her babies during her pregnancy because she felt like she was out of her body, almost like her body was a war zone.
"I’ve never heard anyone say it’s because I don’t love the baby," Baumann said. "It’s just that this disorder blocks them from being able to fully love the baby."
That’s why she’s trying to get these women to get fully recovered so they can be fully present and be there for their children, not thinking about binge eating and purging while the baby is taking a nap.
"When that eating disorder can be healed, the mom is going to be able to be the best mom that she can be," Baumann said.
Recovery is also important for the family, as the kids get older.
"These kids catch on pretty quick," Baumann said. "Why does mom always go to the bathroom? They’re like four years old and they know."
Eating Disorder and Breast Cancer Survivor
Right before Baumann started facilitating the support group Lift the Shame, she was diagnosed with breast cancer and had to have a mastectomy, which brought on even further challenges.
"Things keep happening in life," she said. "You’ll recover from this but ... other things happen in life and you have to be able to ... have healthy coping skills and use the support systems that you need."
She believes her experiences with her eating disorder helped her get through her breast cancer treatments, since she was able to cope and use her inner strength to get through that process.
Being a strong and resilient woman, Baumann was determined to get the support group started despite all of life’s challenges, and it is now thriving.
She even welcomes guest speakers on occasion, including a dietitian during one session and recently, Dr. Kimberly Dennis, the CEO and medical director of Timberline Knolls Residential Treatment Center.
Dennis has not personally experienced pregorexia, but she has been in recovery from bulimia and anorexia since 2001.
"I shared my own personal recovery story for one of the group meetings, which was a wonderful experience," Dennis said.
She continued her recovery during her recent pregnancy, and her baby is now three months old.
"I consulted with a dietitian to make sure I was getting the quantity of extra food I needed to support the growth of my baby," Dennis said in an email.
Baumann encourages women to address the underlying issues of their eating disorders through therapy.
"You have to clear out the reason why the eating disorder developed, and if you don’t do that then the person’s not going to get recovered," she said. "But I do believe in full recovery, and it takes a lot of work and you need support."
This year, National Eating Disorders Awareness Week (NEDAwareness Week) was held February 22 to February 28, 2015. But let us not forget that this awareness of eating disorders like anorexia nervosa and pregorexia can be spread every day, which is the goal of groups like the National Eating Disorders Association.
For more information, visit http://nedawareness.org
Sources:
Baumann, Maggie. Phone interview. January 31, 2015. http://www.maggiebaumann.com
Dennis, Kim. Email interview. February 6, 2015. http://www.timberlineknolls.com/information/about/staff/medical-director-kim-dennis
Setnick, Jessica. Email interview. February 6, 2015. https://www.remudaranch.com/about/our-team
Harms, Roger. Mayo Clinic. Pregnancy week by week: Is pregorexia for real? Web. February 24, 2015. http://www.mayoclinic.org/healthy-living/pregnancy-week-by-week/expert-answers/pregorexia/faq-20058356
American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders: Fifth Edition. Arlington, VA: American Psychiatric Association, 2013. http://www.dsm5.org/Pages/Default.aspx
National Eating Disorders Association. National Eating Disorders Awareness Week. About #NEDAwareness Week. Web. February 25, 2015. http://nedawareness.org/
Timberline Knolls Residential Treatment Center. Support Groups for Eating Disorders. Web. February 25, 2015. http://www.timberlineknolls.com/information/support-groups
Reviewed February 27, 2015
by Michele Blacksberg RN
Edited by Jody Smith