Writing about her journey of pregnancy loss and grief has not been easy for journalist Isabelle Oderberg.
Oderberg had seven miscarriages on her way to having two living children, an experience she discusses in Hard to Bear: Investigating the Science and Silence of Miscarriage.
And though sharing can be tough, it's important to Oderberg not to "shy away" from her experience.
Silence surrounding miscarriage is "where a lot of problems stem from", she tells ABC RN's Life Matters.
Problems like friends and family misunderstanding what people who are grieving miscarriages need and the health practitioners unknowingly doing further harm.
"We're not talking about miscarriage enough," Oderberg says. And it's stopping us from improving our responses to it.
"We have to stop the silence. We have to talk about it," she says.
'Why are you so upset?'
For her book, Oderberg put a call out to interview people with a lived experience of miscarriage.
She learnt how easy it was to find people who'd had awful experiences.
"I couldn't even begin to interview all the people that came forward and said, 'I had this terrible experience I want to tell you about'," she says.
"It just shouldn't be this easy for me to find people who've had terrible experiences with the system, or with friends and family who don't know what to say, or with psychologists who say, 'Don't worry, it's just a loss, move on, get over it, just try again'."
In the medical system, Oderberg believes "the vast majority of medical professionals want to do the best they can for their patients".
"But there's a lack of understanding," she says.
For example, when she asked the ultrasonologist who did her pregnancy scans if he'd consider seating people with threatened miscarriage in a separate waiting area from heavily pregnant people, it didn't go well.
"He looked at me and he said, 'Why would I do that?'"
Yet, Oderberg is not alone in struggling with this issue.
"If you go into the support groups, it's one of the biggest complaints," she says.
"Because when you're in an early pregnancy and you're bleeding and you're sitting in an ultrasonologist office waiting to find out if you're still pregnant or not, or whether you are going to stay pregnant, it's very confronting when you are then around people who are on the verge of giving birth. That can be really difficult."
Oderberg also encountered misconceptions about whether her miscarriage was a loss.
Some medical professionals conveyed the message, "Why are you so upset? It was something the size of a poppy seed?", she says.
"I want them to understand the reason for the grief … [that] when you are pregnant with a pregnancy that you want, you're envisaging a baby in your mind.
"You've created a child in your mind's eye, and you [think], 'What's the name going to be? What are they going to do for work? What is their eye colour? Is it going to look like me? Is it going to look like my partner or my donor?' It's called personification."
Jade Bilardi, a research fellow at Monash University who has researched the support gaps surrounding miscarriage, says it is often "an unseen loss", which carries no "rights or rituals".
"It's a loss that we don't see, we don't recognise," she says.
This can invalidate the miscarriage experience.
"A lot of people can feel a lot of guilt and shame around the level of grief and loss that they experience," Dr Bilardi says.
Acknowledgement is key
"Probably the biggest thing that [people experiencing miscarriage] need is acknowledgement of their loss," Dr Bilardi says.
That includes from family, friends and healthcare providers.
"They need their loss validated, and to know that it's okay to grieve, it's okay to feel the loss that they do."
Dr Bilardi says acknowledgement of loss should extend to partners.
Her research with male partners of women who have miscarried has shown the men "experienced similar intensity of grief to their female partner — but that's often not acknowledged".
"So they can often feel like a passenger in their own experience of pregnancy loss. They'll often position themselves as the support person, but not get the acknowledgement and support they need," she says.
It can leave partners feeling "particularly alone and isolated, and often not knowing how to deal with their feelings or who to talk to or where to go", Dr Bilardi says.
She also acknowledges that an individual's grief and loss can be hard topics for other people to tackle.
"They don't know what to say, they're worried about saying the wrong thing.
"But saying nothing at all is worse, because it … doesn't say to them, 'You have experienced this loss, it's okay for you to feel what you're feeling'."
It's a good idea to steer away from cliches, Dr Bilardi says.
"We often hear about people [say], 'You know, it wasn't meant to be' [or], 'At least you know you can get pregnant'."
But throwaway lines like these can undermine a person's loss.
"These comments are well intended most of the time, but they can be really hurtful and dismissive of people's loss," she says.
A need to disclose
Oderberg says there is "no compulsion" to share your experience of miscarriage.
"If telling people is not your bag, absolutely don't do it. You are absolutely entitled to grieve or disclose in any way that is appropriate for you," she says.
But Oderberg found that she needed to.
"I had to disclose at places like work because I couldn't function the same way," she says.
"I needed people to know what I was going through so that they could understand, but also so that my peers who had experienced loss before me could say, 'I know how you're feeling, what do you need?' [or], 'I had a loss and I now have a living child. There is still hope that you will get there, do not lose hope'."
Silence about miscarriage can leave people feeling alone and "like it's just them", Oderberg says.
Whereas knowing "you are going through something that so many people before you have gone through", and being open about it, can create opportunities for people to offer support and care.
The positive responses to Oderberg from others who've experienced miscarriage is motivating her to keep sharing her story. They are also helping her understand how communities and medical systems can meet the needs of those grieving pregnancy losses — starting simply by listening to them.
"We have answers, we have understanding, we have explanations — it's just that people haven't necessarily been exposed to it," Oderberg says.
RN in your inbox
Get more stories that go beyond the news cycle with our weekly newsletter.
