Treating triggers
According to Dr. 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.
Dr. 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.
Seeking community
The internet has become a place where women with tokophobia and less severe fears about pregnancy can share their experiences. On the online 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.” Ms. Kilcoyne said she has not sought counseling or help from a clinician.
“I’m not sure I even want it,” she told this news organization. “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 said in an interview. “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.”
Ms. 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.”
A version of this article first appeared on Medscape.com.