The Trauma of Birth – Understanding Tokophobia

 

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I finally admitted something. It’s been crouched in a shadowy little corner of my brain, waiting for me to notice and acknowledge it.

I am terrified of becoming pregnant.

You may be thinking, “Oh, it’s only natural to be a little nervous” but I’m more than a little nervous. Panicky might be a better word. Like this IUD can stay in me forever. My anxiety becomes overwhelming at just the thought of losing my little T-shaped friend because then I might become pregnant and then nine months later THE BABY HAS TO COME OUT OF ME.

Don’t get me wrong. I love children. I’ve wanted to be a mom since I was pretending to breastfeed my Cabbage Patch baby at the age of three. In fact, as a young girl I was fascinated with pregnancy and childbirth. I read What To Expect When You’re Expecting when I was 14 and I wasn’t the least bit put off by the idea of an eight pound human being expelled from my body. I’ve photographed maternity and fresh 48 sessions; never once did it unnerve me. Even as I write this, I do still want a baby. However, now that I am almost thirty and married and “ready” to start a family, the reality of what would or could happen to my body – and the chance that something horrific could happen to my child in the process – is too close for comfort; it’s suddenly a real possibility filled with terrifying “what if’s”. I sort of assumed our decision to stop using contraception would come easily and be exciting and wonderful but now just the conversation fills me with dread. Everyone including myself sees it as the “next big thing” to check off my adulthood To-Do list. But it scares me so very much. I’ve actually thought, “Maybe I only think I want children. Maybe I’ll be just as happy without them.”

That thought has filled me with more shame than I can say. Because every woman can’t wait to be pregnant, right? Isn’t motherhood the ultimate goal in life if you own a uterus? Just look at all the happy, glowing pregnant faces out there – how could I not want that?

Well, maybe she’s glowing because it’s been 95 degrees all summer and she just threw up from her never ending “morning sickness”. No thank you.

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Maybe you can relate. You’re a woman of childbearing age who has felt the same way and wondered if you’re alone because you’re surrounded by the intense societal pressure to be a mother and it seems everyone else is comfortably going along with it. Your friends are having baby showers and going to prenatal classes and you’re over here almost crying like, “Nah, I’m good. No dilation for me, thanks”. Maybe you’ve already done the pregnancy and birth thing but had a very traumatic experience and so the prospect of doing it again is enough to make you want to perform an at-home hysterectomy. Or perhaps it’s your partner who has expressed a strong aversion to becoming pregnant and you’re not quite sure how or why.

As it turns out, there is a word for this dread of pregnancy and/or childbirth and it’s tokophobia.

What is tokophobia?

Tokophobia is simply defined as an intense fear of childbirth. It is “a morbid fear of childbirth which in many cases is so profound that it sometimes leads to a complete avoidance of pregnancy, even though many sufferers admit they would dearly love children” (Are you Tokophobic? The Women Who are Too Terrified to Give Birth by Sadie Nicholas). Between 7-26% of women worldwide experience tokophobia. There are two medically-recognized (though arguably not widely understood) types of tokophobia. Primary tokophobia occurs in women who have never experienced pregnancy but have an intense aversion to or fear of becoming pregnant and birthing a child. Some of these women want children while others are content to not have children (please do not assume that any woman who does not want to have kids must therefore be tokophobic). Secondary tokophobia occurs in women who have had traumatic pregnancies and/or birthing experiences. Many of these women experience post-traumatic stress as a result of their birth experience.

“PTSD can affect women in pregnancy and after birth. PTSD in
pregnancy is usually due to non-obstetric events such as abuse or
other trauma. After birth, a substantial proportion of PTSD is
associated with the events of birth itself. Research on PTSD in
pregnancy and post partum is relatively new but clearly demonstrates
the importance of recognising and treating women with
PTSD at this time. Women with PTSD in pregnancy are at greater
risk of pregnancy complications and poor health behaviours that
can have a negative impact on the woman and fetus. In community
studies, up to 7% of women report PTSD in relation to birth
(Ayers et al., 2008). Rates of PTSD are higher in high risk groups
such as women who have preterm or stillborn infants or lifethreatening
complications during pregnancy or labour (Turton
et al., 2001; Elklit et al., 2007; Kersting et al., 2009).”

Excerpt from Fear of childbirth, postnatal post-traumatic stress disorder and
midwifery care, Midwifery 30 (2014) 145–148

Primary and secondary tokophobia will manifest themselves in similar ways. The specific trigger for the fear may differ among the women experiencing either type. For example, one woman might be completely freaked out by the thought of something living inside of her while another woman doesn’t mind that as much as the thought of that something having to come out of her.

There is also a third type of tokophobia. It’s an idea presented by Brian Salmon, a doula and lactation consultant, and it’s known as social tokophobia. In an interview for The Atlantic, Salmon offered his definition:

“ ‘Instead of it being true to secondary tokophobia, it is social—because people suck. They tell you the worst stories about their pregnancy, about their breastfeeding; all of these things.’ Salmon estimates he works with roughly 300 couples of various sexual orientations every month, and of those at least one in 10 have a severe fear of birth. ‘What happens is other people’s stories get ingrained in your head and anticipation of the unknown kicks in,’ he says.”

Excerpt from Too Afraid to Have a Baby by Ashley Lauretta 

If you’ve ever panicked because a friend is sharing her birth horror story and using words like “vaginal tearing” or maybe Pinterest JUST WON’T STOP SHOWING YOU ARTICLES ABOUT CHILDBIRTH and it makes you want to throw your phone across the room, you get the idea. The media plays a huge role in shaping our views and opinions and childbirth is no exception to the rule. Similarly, the stories and outlook of other people will naturally influence a person’s view of pregnancy and childbirth.

For a formal diagnosis of tokophobia, talk to a medical professional. If you experience any level of anxiety or fear leading up to conception or during pregnancy/childbirth, talk to your O/BGYN, doctor, or midwife. You have the right to be heard and treated with respect and dignity through the process. If you don’t feel like you’re being heard, and you have the option to do so, consider switching care providers (that goes for anything related to your physical or mental health).

Who are the women being affected?

While there are certainly women who do not fear childbirth and are capable of embracing the process of labor and delivery, it’s quite rare – especially in the U.S. – to meet a woman who, at the prospect of labor and delivery, is 100% chill with not even a hint of anxiety. Even the best laid birth plans can promptly get thrown out the window. As one of my best friends would say, even numb from the waste down, “Labor doesn’t tickle”. But what is the difference between natural nervousness and intense dread? Is there a group of women more prone to tokophobia than others?

“The line between common pregnancy fears and worries, and a true phobia of pregnancy can be drawn in terms of how they influence your life choices and your pregnancy.

In extreme cases of tokophobia, women will avoid getting pregnant at all costs. If an unplanned pregnancy does occur, she will likely terminate the pregnancy or if she decides she wants to keep the baby – opt for cesarean section even though there is no medical basis for her decision except her fear.”

Excerpt from Fear of Pregnancy – (It’s a Real Condition & It Has a Name) on Pregged.com

If you were wondering why tokophobia is the topic of choice for a blog related to abuse and healing from abuse, here’s the tie-in: research has shown that women who have experienced sexual abuse in the past are probably more susceptible to tokophobia than those who have not. In fact, women who have experienced abuse or trauma or have been diagnosed with PTSD, depression, anxiety, OCD, etc. seem to make up the majority of tokophobes.

As you may already know from reading other posts, I personally fall into this category and have been diagnosed with PTSD, anxiety, and depression. As my own fears regarding birthing a tiny human have grown, I’ve wondered if there was a connection and apparently there may well be. Consider why past trauma or mental illness might make pregnancy and/or childbirth so intimidating: you may feel you have lost all control of your own body once again. Not only are you growing a whole separate person inside you (and that person has to come out one way or another) but you’re being bombarded with information and advice, poking and prodding which can all feel very chaotic and potentially re-victimizing. Your body which has already been alienated may now feel altogether foreign and this could put a huge damper on what’s already been low self-esteem.

“A history of sexual abuse, rape, or childhood abuse, is extremely important in the genesis of tokophobia in many cases. Such women may feel naked, threatened, or experience the revival of old memories when they are required to adopt the typical dorsal position which exposes their genital regions, and when they undergo the vaginal examinations which are so common during a normal delivery.”

Excerpt from Causes of Tokophobia by Liji Thomas, MD

Secondary tokophobia, or a post-pregnancy fear of subsequent pregnancy and/or childbirth, is the most common type (about 75% of all tokophobic women experience secondary tokophobia). Possibly they had a very difficult pregnancy, a life-threatening labor and delivery, or they may have even lost their baby. Their fear comes from past trauma. If you’ve ever been in a car wreck and then been nervous to get back in the driver’s seat, it’s the same idea.

The remaining 25% experience primary tokophobia. “Primary tokophobia frequently develops in adolescence, putting many women off the idea of pregnancy for the rest of their lives. The feeling of dread is always present when thinking about pregnancy, whether or not the woman in question actually wants kids” (Meet the Women with Tokophobia, an Inexplicable, Crippling Fear of Pregnancy by Kate Hakala). Some women report that they saw a movie about or a video showing childbirth while they were still very young and they point to that experience as the origin of their fear. Others grew up hearing birth horror stories from their mothers, grandmothers, sisters and out of that the fear grew. For some women, it stems from a fear of medical procedures more than anything. It’s something different for each woman.

Some women may not experience tokophobia until they become pregnant; one woman wrote, “I expected to feel elated, but looking at the result [of the pregnancy test] I felt fear and terror wash over me” (Experience: I am Afraid of Pregnancy from The Guardian).

The effects of tokophobia are varied and may depend upon the severity of the phobia in each individual woman. For example, the study of one woman found that her fear was so great and influenced her daily life so profoundly that she experienced suicidal ideation; having been told that no form of contraception is 100% effective, she stopped having sex altogether. This naturally had a huge impact on her relationship to her husband and on her own mental health. She’s not alone; many tokophobic women forfeit sexual intimacy rather than risk pregnancy. There are women who report panic or revulsion at the sight of another pregnant woman while others are not so bothered by the thought of pregnancy as they are the potential perils of delivery and may spend hours asking Google for answers to their most terrifying birth questions.

Regardless of whether a tokophobe does or does not desire children, the condition inevitably brings with it a tremendous amount of shame. “Since there is little to no awareness about the condition, most women with tokophobia don’t share their feelings for fear of being be judged. Women with tokophobia are afraid they will be told, ‘Millions of women give birth naturally, so why can’t you?’ ” (Fear of Pregnancy – (It’s a Real Condition & It Has a Name) on Pregged.com).

Can it be treated?

As with nearly any other phobia, treatment options are available for women seeking help. For example, in the case of the woman mentioned above, Fluoxetine (aka Prozac) was used and ultimately brought about significant relief. While anti-depressants can be used to treat tokophobia some women may wish for a non-medicinal route, especially if they do become pregnant. Counseling, therefore, is a popular choice of treatment for tokophobic individuals. There are also numerous tokophobia support groups (Tokophobia Support Network on Facebook, just to name one). Talk to your doctor about which option(s) are best for you. Talk to your partner, as well; I have the tremendous benefit of a husband who is supportive but not all partners or spouses will necessarily understand when you start crying because you’re so afraid of becoming pregnant. Whether your partner is supportive or not, couples therapy might be a good option, too.

As mentioned above, some women with either primary or secondary tokophobia still choose to intentionally become pregnant. They face their worst fear and all the unknowns that come with the process of carrying and delivering a tiny human. You can read about how one woman dealt with the added difficulties which come with being tokophobic while pregnant here. With the proper levels of support (and more often than not an elective scheduled C-section) there are tokophobic women who are still able to carry and birth their children. Adoption is also another terrific solution for those tokophobic women who know they want to have a family but for whom pregnancy is not an option.

Responding to Tokophobia

As with survivors of abuse, often what women living with tokophobia need more than anything is to know that they are not alone and that there is someone willing to listen without passing judgment.

One of my greatest fears is flying. I have faced that fear twice – to get to Ireland and back – yet the fear remains. I faced the prospect of flying again earlier this year and the panic attacks leading up to the trip were so severe and long-winded that my husband offered to drive me 16 hours to our destination instead (conveniently that was an option). When people learn of this fear I have, they typically say, “But more people die in car crashes than in airplane crashes” or “You’re safer in the air than on the road”. I have never, upon hearing my Mazda is more of a deathtrap than a 747, thought, “Wow! Thanks! I’m not afraid to fly anymore! I’m going to book a very long, 24-hour non-stop flight right now to celebrate.” Why? Because statements like that do nothing to calm my intense fear of flying. If nothing else, they fill me with tremendous shame because this fear is perceived as a ludicrous character flaw that I need to just get over.

Similarly, when a woman is vulnerable enough to tell you that she fears childbirth, consider how your reaction will make her feel. For exmaple, tokophobic women (and non-tokophobic women) who do not want to ever have children do not want to hear, “Oh, you’re still young. You’ll change your mind” or “Wow, but don’t you think that’s kind of selfish?” or “You’ll regret that” or “But you’d make such cute babies!” Those comments are insensitive and ignore the fact that her reproductive planning is not your business. It’s not your body, it’s hers and, while you might really wish she would have children, it’s not up to you. Instead, consider how you can support her decision and/or fears in a way that shows you value her as a person. You don’t have to fully understand what she is feeling to empathize with her.

I have long thought we as a society need to change the way we talk about pregnancy and reproductive health, how we approach prenatal and postnatal care, and, especially, how we talk to and about women of childbearing age. Ultimately, a change in the conversation could make a difference in the number of women experiencing tokophobia in the first place. Whether a woman is dealing with tokophobia or not it is exhausting to hear over and over again, “So when are you going to have a(nother) baby?” Sure, people get excited about babies and that’s great but 1) not everyone wants to have a kid which is 100% okay, by the way, and 2) those of us who do may not be in a position to become pregnant. And we may not be comfortable telling you that at a family birthday party or in the middle of the Target tampon aisle. Whether it’s tokophobia or infertility or a recent miscarriage, you do not always know what someone else is going through and a well-meaning question like that can induce a lot of anxiety, guilt, shame, and grief. Consider rephrasing the question; perhaps ask instead, “Would you like to have kids?” Or, consider not asking at all. There’s no harm in keeping your curiosity to yourself.

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There are numerous articles linked throughout this post and I encourage you to read them because they’re filled with great information as well as stories from women who live with tokophobia and understand best how it feels and what it looks like.

One resource that has been helpful to me was Ina May’s Guide to Childbirth. A friend loaned it to me stating that it has helped her overcome her owns fears during pregnancy. I was skeptical but upon reading it I was pleasantly surprised. The whole first half is filled with personal birth stories but they are positive and (I was genuinely surprised to find) empowering. The whole book dispels many birth myths and misconceptions that our culture has come to accept as scientific fact. While it actually quieted some of my fears it also helped me better verbalize my remaining fears with greater specificity and provided tools I can use if and when I do become pregnant to be sure my needs are being properly met and my wishes respected through the process (for example, there is a whole long list of questions to ask an OB/GYN, a midwife, and/or a doula before you commit to them as a care provider). Of course, I do not recommend it if your tokophobia is triggered by descriptions of pregnancy and birth. However, if you are or think you may be tokophobic but want to conceive and want a perspective that is not the modern pathological, medical-intervention-heavy approach to birth this can be a great read. You might even consider reading it within a therapeutic context so you have support readily available as you process the information.

 

 

 

 

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