What It's Like To Have Tokophobia, The Extreme Fear Of Pregnancy

photographed by Ashley Armitage
Over seven series, Call the Midwife has dealt with just about every maternal health issue imaginable, but last night's episode marked a first for the Nonnatus House crew: a heavily pregnant woman so traumatised by a previous forceps delivery that she dreads giving birth again. Her refusal to seek medical help is misunderstood and mocked by her mother-in-law, who more or less tells her to get over it. Per usual, kindly Dr. Turner takes a more empathetic view. The issue, he notes, is not with her body, but with her mind. This is more than a squeamish attitude towards pain; it's a very serious phobia that affects countless women.
It's a gripping episode but one that 35-year-old Kate Motley is unlikely ever to watch. Doing so may trigger her own tokophobia — the name the British Journal of Psychiatry finally gave to this profound fear of pregnancy and childbirth, classed as a psychological disorder after being formally recognised back in 2000.
As noted by research in the Industrial Psychiatry Journal, tokophobia can affect both women (some as young as adolescents) who have never experienced pregnancy (primary) and those who have developed symptoms as a result of a traumatic childbirth in the past (secondary). Prenatal depression, miscarriage, and other obstetric issues can also trigger secondary tokophobia.
Motley says she's always had an aversion to pregnancy, and, like many women who experience tokophobia, relied heavily on birth control. But it wasn't until she fell pregnant, and her fears intensified, that she was able to identify her symptoms as something much more than run-of-the-mill stress. Here, Motley — now mother to a newborn baby girl — shares her harrowing account of living with tokophobia and getting through her pregnancy.
"I'm 35 and I just had my first child, which could be considered quite old. But I never wanted to have children. I went to university, I went travelling, I did everything to avoid having children. And when it came up in previous relationships, with somebody wanting a family, I always made excuses. It was always, 'we just booked a holiday' or 'the house isn't ready'.
"I took the pill constantly for 20 years. I never, ever, ever had a break, to avoid getting pregnant. I also insisted my partners use condoms, so it was like a double [protection]. And even then, if I thought there was any chance of getting pregnant, I did take the morning-after pill on several occasions to really triply make sure there was no pregnancy.
"But then I met my current partner and he really wanted to start a family. I had talked about the option of adoption because I just couldn't take the thought of childbirth. There are lots of different types of tokophobia, but for me [the fear] was all around the labour rather than not wanting children. I desperately wanted children. I was very happy to adopt.

When I got the positive pregnancy test, part of me was filled with dread

"He asked if we could try naturally first, so we met in the middle ground. We started trying and I conceived within a year with our little girl. To be honest, almost straight away tokophobia kind of reared its head. When I got the positive pregnancy test, part of me was so excited and part of me was just filled with dread. It all kind of went downhill from there in terms of my anxiety and my fears.
"I spent all of my booking appointment in tears with the midwife. I couldn’t comprehend how I was going to get this baby out. I just couldn't see it — I was absolutely convinced we were both going to die.
"At 16 weeks I had an appointment with my midwife, which is standard procedure. I went in and asked for a C-section there and then. I just couldn't take the thought of delivery and didn't feel like I could do it. I told them I'm terrified of hospitals, and terrified of people touching me, and terrified of blood, terrified of needles. Get this baby out. That's when they said I might have this condition called tokophobia. They asked me lots of questions and referred me to the perinatal team for a specialist assessment. I'd never heard of tokophobia. I was still like, I'm not really sure that's me. But when I met with the team and they explained to me what tokophobia was, I thought, Oh my goodness, this is totally me.
"I had a huge amount of work [to treat my tokophobia]. I had cognitive behavioural therapy around 20 weeks. I also had gradual exposure, so I had to learn to walk into the hospital ward, into labour, into the theatre where they'd be doing the operation. I don't say this in jest, but I don't believe my daughter and I would be here had it not been for the specialist support that we received. They also granted me the C-section on the grounds of the tokophobia, because my fear was so extreme. And I think to this day it was the best thing I've ever done.
"I'm blessed and I'm so lucky to have [my daughter] and I love her so much. But the nine months of my pregnancy were the lowest, most miserable experiences of my life, and I don’t say that lightheartedly. It got to the point where I couldn't get out of bed, get washed, and go to work. It was just so frightening and so haunting and I was having nightmares about bleeding or losing the baby. Everything was just so centred around the anxiety of giving birth.
"One of the biggest problems with tokophobia is the stigma. Everyone expects you to be really happy when you're pregnant and planning these amazing water births with candles and aromatherapy and you bloom and you look wonderful and it's such an amazing time. And I felt none of that. I felt like a failure. I felt like I wasn't a woman. I didn't want a baby shower, and that caused a lot of problems. A lot of people couldn't understand why. I didn't do any of the exciting pregnancy things. And that was the biggest stigma, that people couldn't understand why I wasn't on cloud nine.
"Lots of things can trigger my tokophobia. I'm 35, I've got a baby of my own, and I promise you I've never, ever, ever seen an episode of One Born Every Minute or Call the Midwife. And should something come on TV where a character in a film has a baby, I would immediately turn it off or leave the room. The other thing that's a big trigger is other people's birth stories. There seems to be a culture where women feel the need to compete for the worst horror story of their labour. You never hear somebody say, 'You know what, I had a really good birth. It was really positive, it was what I wanted it to be'. There are always these horror stories that you think, Oh my god, this sounds barbaric.
"I genuinely don't want any more children. To be honest, I asked for a full hysterectomy. There was nothing wrong with my uterus, so the hospital couldn't do it as an elective surgery. I get where they're coming from; we're very privileged here with the NHS but you can't have everything. I would like my partner to have a vasectomy. I need to think about some more permanent birth control.

My advice for women experiencing symptoms of tokophobia would be to talk — to really, really talk

"My advice for women experiencing symptoms of tokophobia would be to talk — to really, really talk. See somebody — be it your midwife, your doctor, a specialist counsellor or a therapist. The worst 17 weeks of my life were the 17 weeks before I got help. When I met with the team and they said that they'd work with me, the relief and the loneliness were definitely alleviated a little, because there was finally somebody who got it. I felt like there was somebody on my side rather than feeling like a freak show.
"Now, post-partum, I would just like to offer other women support because my biggest thing was the loneliness. I still have never met any other women with tokophobia. Recently I was privileged to speak about tokophobia as part of a mental health campaign with student nurses and midwives. So many people don't know anything about it. I didn't know anything about it. And I was really brave last night. I've never told anyone about my tokophobia, as I was too ashamed. But last night on my way home I put a post on my Facebook talking about my tokophobia presentation and 70 people messaged me saying, 'Oh my gosh. This is me. I can relate to this.'"
This interview has been edited for length and clarity.
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