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After my miscarriages I didn’t need to talk – I needed access to better care

<span>Photograph: Keith Morris/Alamy</span>
Photograph: Keith Morris/Alamy

Taboo is an overused word in the media, isn’t it? Miscarriage, in particular, is often described as one of the “last taboos”, although I’ve also seen the label attached to menopause, periods, post-natal depression, finances, pelvic organ prolapse and male incontinence. When Carrie Johnson announced last weekend that she was expecting another baby this Christmas following a miscarriage that she described as “heartbreaking”, the word surfaced again in headlines: “Carrie’s rainbow baby helps shatter the miscarriage taboo”.

I understand the impulse to reach for this kind of language. When I had my first miscarriage, four years ago, it was as if I’d walked into a cave of white noise. Leaving the early pregnancy unit that day with nothing to show for my three-month pregnancy but a pair of hospital-issue paper pants and a flimsy information pamphlet, I felt numb and empty – emptied – and tried to recall a single conversation I’d had about this. The best I came up with was a few lines in an old episode of Sex and the City.

So tropes of “breaking the silence” and “speaking out” feel somehow right. Despite being told by medics that it is incredibly common, when you suffer a miscarriage you still feel alone and adrift in a world that fetishises pregnancy yet encourages people to keep it a secret for the first trimester – when an estimated 85% of miscarriages take place.

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I went on to lose three more pregnancies in a little under two years. Each loss dropped like a stone into the empty places inside me, stacking up like a cairn to disappointment, lost possibilities and hypothetical children. I wrote about it all as I went, for newspapers and magazines, and also through my own blog. But I was far from the only one talking about it.

Since my first miscarriage, Michelle Obama, the Duchess of Sussex, Chrissy Teigen, Alex Jones, Myleene Klass, Stacey Solomon, Gemma Collins and Beyoncé have all spoken publicly about their losses. The MP Olivia Blake recently told her personal story in parliament, no less. Is taboo really the right word any more? Was it ever?

Johnson is not the first prime minister’s wife to have gone public about a miscarriage. Cherie Blair lost a baby almost 20 years ago. The striking thing about some of the coverage from that time is how little things have changed. News reports reference sorrow and heartbreak. One feature consoles Cherie that she shouldn’t blame herself, that miscarriage is sometimes “just bad luck”.

We seem unable to shake off a pervasive sense of fatalism that surrounds miscarriage. Many still perceive it as simply “just nature’s way”, a sad but ultimately natural and necessary kind of quality control. But this belief is premised on a misapprehension. Some experts now believe as many as half of all miscarriages are actually of healthy, chromosomally “normal” embryos. In other words, these losses could – theoretically – be prevented. Yet research into the causes of miscarriage is thin on the ground. As are reliable treatments.

In the UK, people qualify for further medical investigations only after they have experienced three miscarriages in a row. Even then, about half of those seeking explanations for their multiple miscarriages won’t get any answers. Sometimes, all the best specialists can tell you is to “just keep trying”. Unless miscarriage care and research improves, women will continue to feel abandoned and alone when it happens to them, however many stories they have heard about it before. We’ll continue to play pass the parcel with the same scant, unsatisfactory medical facts year after year.

Related: My four miscarriages: why is losing a pregnancy so shrouded in mystery? – podcast

Although we are frequently reminded of how common miscarriage is, in the UK there is currently no proper, complete record of the number that happen each year. The baby loss charity Tommys finds that 20% of women who have had a miscarriage will go on to experience clinical PTSD, while the risk of suicide is quadrupled.

A petition from the charity, which has more than 222,000 signatures, prompted the government to agree to record the number of miscarriages each year as part of its women’s health strategy. This is a long overdue step towards taking miscarriage more seriously, but there are still bigger cultural shifts that need to happen – such as workplace policies that mean women feel comfortable revealing they are pregnant early on without fear of redundancy, discrimination or the stigma of the “mummy track”.

Sharing experiences can be powerful: I know first-hand that other people’s accounts can feel like a liferaft. But I do wonder if, by framing miscarriage as a taboo, we risk implying that talking is the only remedy required – or even all that can be done. It’s an approach that can unwittingly cover over all manner of data gaps, structural inequalities and inadequacies in medical care. Perhaps what we need to ask ourselves isn’t so much why we aren’t talking about miscarriage, but why we aren’t listening.

  • Jennie Agg is a freelance journalist specialising in women’s health

  • In the UK and Ireland, Samaritans can be contacted on 116 123 or email jo@samaritans.org or jo@samaritans.ie. In the US, the National Suicide Prevention Lifeline is 1-800-273-8255. In Australia, the crisis support service Lifeline is 13 11 14. Other international helplines can be found at www.befrienders.org.