Untangling tocophobia

A pregnant women once asked me a really good question, to which I didn’t know the answer.

“What’s it called when you’re fearful of medicalisation?”

I paused for a moment.

The first word that came to mind was iatrophobia, but it didn’t feel right in that context and ten seconds on a search engine confirmed that iatrophobia is a fear of doctors.

Which is interesting in itself, because the word iatro-, which is Greek for healer, is also the root of the word iatrogenesis, which describes the unwanted effects of health care that can stem from medicalisation.

The iatrogenic effects of health care, according to Ivan Illich, come in a variety of forms from clinical iatrogenesis, where medical intervention causes side effects which are worse than the original problem, to social and structural iatrogenesis, which describe states where people become docile and reliant on the medical profession and/or give up their autonomy.

That’s especially important in relation to their capacity for self-care. None of these states, by the way, are necessarily the fault of individual doctors or other healthcare providers. They are socio-cultural processes whose root systems are complex and deep.

We’re not talking about fear of doctors, though. The woman and I both agreed that it was entirely possible to like individual doctors very much while still being fearful of iatrogenesis and/or medicalisation on a wider scale. This would seem to suggest that they are different things, although this didn’t take us any closer to finding the answer.

But it’s a great question, because I am seeing more research and articles being published which include the word tocophobia, or fear of childbirth. And yet in at least some of the women I meet who are said (generally by others rather than by themselves) to be experiencing tocophobia, the women’s fear is not really of childbirth itself. Their fear is either partly or wholly of the possibility that they will end up subject to unwanted medical intervention or iatrogenic consequences as a result of engaging with the maternity services.

It’s the system

It was, we realised after talking some more, the maternity care system and the processes, routines and interventions that it contains, rather than its employees that were at the root of her fears.

The woman was concerned about dehumanisation.

She was afraid of being treated like just one animal in a herd.

She was worried that she would be seen by strangers and need to constantly be on guard for things that the system considered important on a population basis, but which she wouldn’t want for herself.

She was very aware that being on guard wasn’t compatible with being in labour and letting her mind relax so that she could allow her body to birth.

A shared concern

After I wrote this piece, several midwives and women contacted me to share their thoughts about this lack of nuance in the way we discuss tocophobia. Even more important to some is the way in which the use of the word tocophobia seems to imply that the woman fears the physiological journey of childbirth when, actually, she is concerned about the way in which she will be treated during that journey.

One woman (who we’ll call Janet) told me how, during her pregnancy, she had tried to talk to caregivers about her fears.

Janet had tried to explain to them that she wasn’t at all afraid of birth itself or even of losing control in order to give birth. She was only afraid that others might take control away from her when she was vulnerable, and do things to her that she didn’t want.

The response that Janet initially received included a diagnosis of tocophobia and the offer of counselling and/or an elective caesarean section. Neither of these was helpful to her.

In this one case, I am pleased to report that Janet eventually gave birth at home with the help of a supportive midwife; yet how many women have been in a similar situation but without a similarly happy ending? When that happens, how often is it because no-one has had time to really tease out the source of their fears?

Tocophobia in the literature

My curiosity was further piqued when I spotted the first systematic review that I have seen on this topic. O’Connell et al (2017) set out to consider how tocophobia was defined in the literature and what its prevalence was. They also noted a wide variation in definitions of tocophobia in the literature.

Although their meta-analysis ‘estimated a global pooled-prevalence of 14 per cent’, O’Connell et al (2017) warned that, ‘this should be interpreted with caution due to significant heterogeneity.’ In other words, the different definitions (and means of diagnosis) of tocophobia used in the included studies may mean that this figure isn’t accurate.

O’Connell et al’s (2017) summary of the factors associated with tocophobia include past traumatic birth or any traumatic experience in health care.

They also find that, ‘reasons for tocophobia may be complex and include lack of trust in or worries about unfriendly staff, being left alone in labour, appearing silly, and lack of involvement in decision-making as well as trauma and previous sexual abuse.’

This would again seem to support the idea that, for at least some women, it is the system that is the source of their concern rather than the journey of childbirth itself.

We need more nuance

I do not, of course, want to deny that some women are afraid of birth itself. This is an important issue that needs close attention. It may need more and more attention if we don’t do more to address the fear-based nature of modern culture. Currently, I hear midwives speculating about the effects of world politics on women’s worries, and we have for years been concerned about the potential impact of birth-related TV programming which now includes so-called reality television as well as unrealistic and overly dramatic portrayals of birth in fictional drama. No wonder people are afraid.

But when we consider what we can do about tocophobia, in the widest possible sense of the word, I hope we can work towards having a discussion that respects the complexity of this term. I hope we can move beyond using a catch-all term without full thought towards a deeper discussion of the nuances. I hope we can include some common-sense questions in this discussion; for instance whether it could be seen as unsurprising and perhaps even healthy for mammals to be fearful or wary of a stranger interfering in their birth. And I hope that researchers will consider going to ask the women whose data were included in studies of caseload midwifery, such as the Albany practice (Homer et al 2017), about their fears. I wonder if they would find a difference.

Listening to women

One of the most important elements of the tocophobia debate is its relationship to maternal mental health and the question of whether we can do more to support women. News that the rate of tocophobia may be higher than we imagined may mean that more is done to support and promote women’s mental health during the childbearing year and beyond. But it seems important not to make assumptions about what it is that women are fearful about. Truly listening to women and their concerns is the first step towards considering whether we can help put some of those fears to rest.