Cee Elliot is afraid of pregnancy. The 29-year-old retail manager in Connecticut said she has felt that way since puberty, when she "finally understood" pregnancy and reproduction. Always squeamish around babies and pregnant people, she said, as she learned more about the complications birth can cause, the idea of carrying a child herself became increasingly repulsive.
Later, Elliot said, she was treated poorly by a partner because of her fears, leading to regular panic attacks. She moved on from that partner, but her fear of pregnancy did not. Along the way, she felt her fears were dismissed by doctors and peers alike.
Tokophobia — a severe fear of childbirth — goes beyond the typical anxieties about birth or pregnancy that women often experience. The condition can intrude on everyday life, crippling social interaction and interrupting regular sleep patterns. Although statistics in the United States don't exist, as many as 14% of women internationally are thought to have tokophobia.
Although psychiatric treatment focusing on past traumas can help, many women resort to managing the condition themselves. Some seek sterilization, whereas others take multiple forms of contraception simultaneously — combining intrauterine devices and oral birth control, for example, experts said. Some women have sought abortions and some even have attempted suicide rather than face giving birth, according to Leila Frodsham, MbChB, a women's health expert at King's College London, who has studied tokophobia.
The International Classification of Diseases added tokophobia to its list of diagnostic codes in 2018. But the Diagnostic and Statistical Manual of Mental Disorders, used by clinicians in the United States, has yet to do the same. Without this designation, some doctors are more inclined to diagnose tokophobia than others, Frodsham said.
"I think some clinicians struggle to understand how much this condition affects women. There isn't training in it, and I'd like to see it discussed more," Frodsham told Medscape Medical News.
Frodsham said she has seen hundreds of patients seeking help with their fear of pregnancy. Many of these women don't know that they might have a condition that could benefit from psychiatric treatment.
Tokophobia typically takes two forms: primary, which affects women who have never given birth; and secondary, which stems from a previous traumatic birth experience.
"It's not the pain of childbirth they are afraid of, but rather their fear comes out of a sense that they lack control over themselves and the situation of being pregnant." Frodsham said.
Although the phenomenon has been studied internationally, particularly in Europe, fear of childbirth remains almost entirely unexplored in the US literature.
One of the only scientific examinations of tokophobia in this country was a 2016 survey of 22 women with the condition by researchers at the University of Michigan, Ann Arbor. Published in the Journal of Obstetric, Gynecology & Neonatal Nursing , the survey found that many of the women expressed concern that their race, gender, or level of income might affect the quality of their care. Some women surveyed said they had experienced traumas directly related to systemic inequalities in the healthcare system.
Lee Roosevelt, PhD, MPH, CNM, a nurse and midwife and a co-author of the study, said fear of the healthcare system, coupled with concern over the loss of bodily autonomy, can foster severe aversion to childbirth. In her experience, she said, clinicians often handle these patients poorly.
"If a woman is making the decision not to have children, we want it to be because she has decided for her, and her body, that it is the right thing," added Lisa Kane Low, PhD, CNM, professor of obstetrics and gynecology at the University of Michigan, who worked with Roosevelt on the survey. "She shouldn't feel the decision is made because she can't access what she needs or the healthcare system is unable to provide it."
Access to midwives, doulas, or therapists trained in trauma counseling can allow women to have a voice in their treatment, Roosevelt said.
No specific medication exists to treat tokophobia; however, drugs for depression or anxiety sometimes help, Low said. "Women with tokophobia may not need medication but would benefit from other therapies like desensitization or biobehavioral approaches or combinations of those," she said.
According to Frodsham, women with tokophobia often experience guilt and isolation. They may avoid speaking to women who are pregnant or avoid discussing pregnancy and childbirth, afraid that doing so may trigger their fear.
"They can't see how they can get close to this catastrophic thing they think is going to happen to them," she said. "Many of them think they will die."
Many patients avoid thinking about memories of traumatic events so as to not trigger extreme emotional responses.
Roosevelt said developing ways to assess and treat tokophobia has become more urgent since the Supreme Court's recent decision to overturn Roe v Wade could lead to more instances of women carrying unwanted pregnancies.
The internet has become a place where women with tokophobia and less severe fears about pregnancy can share their experiences. On the bulletin board Reddit, r/Tokphobia and r/childfree contain thousands of queries and personal stories about the condition, as well as requests for advice.
Jillian Kilcoyne, who lives in New York and attends college in Michigan, said: "Pregnancy has always freaked me out. A part of me believes it's a biological injustice that women have to go through such pain and be ignored by the medical community just to give birth." Kilcoyne said she has not sought counseling or help from a clinician.
"I'm not sure I even want it," she told Medscape. "Some people want to get over their phobia because they want families, and others don't want children at all. I think that those individuals should have the help they need."
Claudia, a South Carolina resident who asked to be identified only by her first name owing to concerns about her privacy, said her tokophobia began when she started having sex. It grew worse when she developed health conditions that could be exacerbated by pregnancy. She said she stocks up on contraceptives and periodically takes a pregnancy test to ease her nerves.
"This started for me when I realized that having children wasn't a requirement for life. I didn't even know there was a name for what I was feeling," Claudia told Medscape. "So, letting women know they have options, and then not making them feel guilty, or ashamed, is the most important thing. We shouldn't try to convince women that motherhood is the only, or the correct, path."
Elliot urged clinicians to have compassion: "Treat tokophobic patients — especially a pregnant one seeking an abortion — like someone with a life-threatening parasite. Don't belittle or dismiss them. We're already going to lose so many lives because of unwanted pregnancies and birth. Don't add to the number."
Lead image: Science Photo Library/Getty Images
Image 1: Leila Frodsham, MbChB, MRCOG
Image 2: Lee Roosevelt, PhD, MPH, CNM
Image 3: Lisa Kane Low, PhD, CNM, FACNM, FAAN
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Cite this: Women With Fear of Pregnancy Call for Clinician Compassion - Medscape - Jul 27, 2022.