And so another infant and pregnancy loss awareness week/month comes and goes. This was my sixth one now as someone all too ‘aware’.
This year, I felt increasingly disconnected from it all. Not least because I was away on a busy trip for the annual wave of light – the lighting of candles in memory – which brought with it its own layer of guilt.
We are, I think, speaking about miscarriage and other forms of pregnancy loss a little more openly today even than we were back in 2017, when I had my first miscarriages. Which is unequivocally a good thing. And yet, just as this conversation is getting going I do sometimes find myself wondering if I should still be joining in. Ironically, just as I start to find it easier to recount the details of my losses, as the immediate trauma has healed and skinned over, there is a voice building in my head, telling me that perhaps it is time for me to stop talking about it.
I don’t know where this pressure comes from. But it makes me wonder whether part of the reason miscarriage has remained taboo (or perceived as taboo) for so long is because even when people do tell their stories they eventually feel compelled to stop telling them, too. The same goes for infertility, stillbirth, neonatal death and termination for medical reasons. After all, no one wants to be accused of ‘going on about it’. Or be seen to be revelling in victimhood. But our stories do go on, our experiences continue to be shaped and re-shaped, accruing fresh insight, and taking on new meanings all the time – whether we choose to talk about them or not.
And we are still very far from a complete understanding of what people really go through after pregnancy loss (this is the major theme of my book, if you’re interested: what we still get wrong, what we still don’t hear about, or even really know about, from a scientific point of view). There is an impression that miscarriage is a short-lived challenge, especially if you do go on to have a child afterwards – as I have done. But there are all kinds of ways it can reverberate, rebounding on you when you least expect it, like any other grief.
Recent research has shown that one in six women experience symptoms akin to PTSD after an early pregnancy loss, such as a miscarriage or ectopic pregnancy, for example. Personally, I still find certain dates difficult: Mother’s Day, could-have-been due dates, sometimes Christmas. Pregnancy announcements fill me with secondhand anxiety, even now. Meanwhile, our history of multiple miscarriages looms over our decision – as yet unmade – of whether to try for another child.
These are just some of the parts of the miscarriage story we are un-used to hearing. They will remain unfamiliar if we don’t find ways to keep talking. But there is a cost to this. On top of the fear of ‘going on about it’, it takes emotional energy to tell and re-tell your story. As much as you may not feel the same visceral pain and sadness you once did, you also do not want to live perpetually in the past. But how do you emphasise why this matters without unearthing the worst feelings you’ve had? If you’re not careful, it can burn you out this kind of emotional excavation. Sometimes, it is easier to say nothing at all, than to dredge it up again when a stranger asks, in all innocence, when you plan to give your baby a sibling.
It becomes especially draining when you start to see how you are having to repeat yourself – when you notice how little things have improved for people going through pregnancy loss for the first time now. There are precious few more answers for those who miscarry today than there were for me five years ago (apart from, possibly, the encouraging new guidance on progesterone) . The care women receive after losing a pregnancy remains patchy, unreassuring, and sometimes downright insensitive. Friends and family still expect people to bounce back quickly, because ‘at least you can get pregnant’.
Cynicism can start to creep in, too. Every time there is a fresh story in the news and someone expresses surprise that pregnancy loss is so very common, or when an official report lays bare how pregnant women are dismissed by healthcare professionals, you wonder how the message is still not getting through. You start to wonder if anything will ever truly improve.
On bad days, it can make you question if it’s even worth saying the same things again and again. There are no easy answers. Sometimes you have to step back, let a fresh batch of headlines or a new campaign pass by without re-sharing what it means to you, so very, very personally. But it’s knowing how badly things need to improve that always pulls me back, that helps me find my voice again. Because, ultimately, I’m not telling this story for sympathy – I’m telling it for change.
- A version of this post was originally published for ELLE UK