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The Adia interview: Julia Bueno, author of The Brink of Being

discussing miscarriage and loss with Julia Bueno

Julia Bueno is a psychotherapist and counsellor, specialising in miscarriage and baby loss. She is also the author of ‘The Brink of Being’ – a book which combines her professional expertise with her own personal experience of recurrent miscarriage, to create a heartfelt and helpful guide for readers wanting to learn more about the experience, as well as those who have had their own experience of such pregnancies.

Julia’s willingness to share her story and channel her grief into something so positive and constructive has helped countless women and couples going through the heartache of loss and fertility struggles.

As part of Baby Loss Awareness Week, we sat down with Julia to discuss the importance of compassionate language, the different ways in which couples can cope with loss and to understand why there is no pecking order to grief.

 

Your book and your other work in this space came very much from your own personal experience, can you tell me a bit about that?

My first miscarriage was 17 years ago. This was my first pregnancy that ended up in a miscarriage of twins in its  22nd week, which involved going through labour and giving birth twice. People had no idea what I had been through – both mentally and physically. I was obviously devastated but also desolated by silence, and lonely. I was one of the earliest of my friends to get pregnant, and few understood pregnancy, let alone loss in pregnancy, so I was left profoundly lonely, and unsupported.

I became fascinated by this lack of support and understanding I experienced – both in the hospital and out. I went on to have three more miscarriages in between the birth of my two sons, and the support and understanding I met continued to be very patchy and inadequate.

 

Did this experience encourage you to become a therapist specialising in miscarriage?

I was considering a career change anyway, and after my first miscarriage, I ended up in therapy as a result of the mental ill-health I suffered – both grief, but trauma too. This process galvanised my decision to train as a psychotherapist. As I mentioned, I was fascinated by the taboo around pregnancy loss, and I had  made contact with The Miscarriage Association soon after I lost my twins, and I then became a volunteer for their support network. I later qualified as a psychotherapist, and later became a Trustee of The Miscarriage Association.

So there’s a culmination of many years of personal and professional experience that I was able to draw upon  to help other people through my therapy – and support – work.

 

What made you decide to then channel this experience into a book?

There are many first-person memoirs about miscarriage that are wonderful and valuable, but of course, they are only one person’s story, so I wanted to put something together that would be as broad as possible.

It’s a big topic, and every miscarriage is different, so I try  to helicopter out and offer a view upon the breadth of the experience, and also to situate it in a history of reproductive experiences for women. I wanted people who haven’t had a miscarriage, or maybe even a pregnancy, to learn more.

 


If you want to discover more books that help you deal with loss and infertility, check out our recommendations for the best fertility books currently out there.


 

In your book, you strive to emphasise that there isn’t a pecking order of grief, which is so important.

I had 4 miscarriages and for each one, the grief took a different shape. There are, of course, physical differences as the gestation progress – you won’t be in a labour ward if you miscarry at 8 weeks, nor do your breasts fill with milk after an early miscarriage. So when a pregnancy ends may make for a different visceral experience, but what I am loath to say is that grief correlates with the length of the pregnancy . I don’t buy into that. It might be for some women, and that’s their truth, but for others, it’s very different.

If I ask one couple ‘tell me about your miscarriage’ there is an individual history there and imagined future family. For example, some may be responding to an unplanned pregnancy so the grief can coalesce with shock. Then there are couples that may try for 20 years before conceiving, so you can imagine the huge loss of potential that has been living in their minds. It’s possible to feel a profound love for an unborn child that has never lived in a woman’s body but in a mind alone. When I sit with bereaved women and couples, that love is palpable to me at times.

 

You write about IVF losses in your first chapter, was it important for you to have them included in this conversation?

Yes definitely, I see them as part and parcel of a much-wanted potential that is lost. I was recently talking to embryologists at Guy’s Hospital, a stone’s throw away from a store-room of canisters containing embryos dividing away to become a future child – or not. It was incredibly moving to see them through the door window.

There was a lot of discussion around the tension between the experience of parents to living children vs those who have an unborn potential child – whether that’s in a womb or a canister, or not even conceived, with a period that is missed each month. But what came out of this incredible discussion is that these staff members really got the power of love for the potential unborn.

 

It sounds like at Guy’s they understand the gravity of baby loss and how to deal with it – do you see this is many hospitals?

Yes some,  but there is still great room for improvement, and both SANDS and the Miscarriage Association are doing lots of ongoing work to train medical staff who come into contact with pregnancy loss  around the use of compassionate care, and language used. The National Bereavement Care Pathway is doing similar work, and is rolling out slowly through NHS Trusts.

There’s a real clash between the clinical, textbook language of pregnancy – words such as  ‘embryo’, ‘foetus’, ‘blighted ovum’ ‘product of conception’ and that of the lived experience of a woman who has lost a ‘baby’ ’ The training around communication encourages staff to take a moment to tune in to their patients’ feelings, and to gauge how they are relating to bad news about their pregnancy.

So if a woman is in floods of tears and is using the word ‘baby’, it’s important to mirror that language, as it reflects the relationship she has forged with her unborn . Of course, other women may be happy with medical language and others may not feel that they have lost a ‘baby’, and that is important to realise and respect that too.

 

Do you think this clash comes from a lack of training?

Yes, but also I think sometimes staff  have to protect themselves. The NHS needs to support the staff who treat  threatened pregnancies – we think that around 50% of women showing up to an Early Pregnancy Unit will be miscarrying and at an Assisted Conception Unit, there are more losses than pregnancies. This is a heavy load of grief for staff to bear, and one way to cope is to cut off and be dispassionate.

I think  we need to think about what training will help them to communicate effectively but also give them the support so they have the emotional capacity to implement that training.

 

We’ve discussed the use of language within the medical profession, what about with family and friends?

After  I had my first miscarriage, a few people  looked at their feet and many others really know what to say. These days I think  people are much better at saying ‘I’m sorry’, but they tend to stop there – they don’t ask you about it any further. What many people don’t understand is that a miscarriage story often starts way back, such as when  ‘I was trying to conceive for a year’ or ‘I met my partner and we started talking about children’. In other words, it starts when the ‘child in mind’ begins to nestle there.

When we are emotionally vulnerable, we’re more permeable and we will recount, replay and ruminate over the bad  experiences and hurtful words just as we remember well the kind words said to us. Both of those may well be remembered forever.

 

What advice would you give to people trying to support someone through baby loss?

First off, I think you need to examine any discomfort you may experience – perhaps you are frightened to talk about the existence of a ‘baby’ in early pregnancy when you are unsure of that, or you don’t like to talk about the visceral aspects of pregnancy loss – the blood and the gore. I think you will support someone best when you have thought about those things so that you are as authentic as you can be.

My guiding principle would be ‘compassionate curiosity’ – find out what the pregnancy meant to that person, because every pregnancy is different from the next. As I mentioned before, miscarriage stories often start way before the pain and the blood began to appear. ‘Tell me about it’ is a wonderful addition to ‘I’m sorry’.

 


If you are trying to support someone going through fertility struggles, you can find more advice on the best approach in our recent blog post How to help someone going through infertility.


 

Guilt is something many members of our community talk about when describing their experience of miscarriage – why do you think that is?

It’s a very rare bereaved woman after a miscarriage that doesn’t express guilt and it baffles me how creative the female mind can be – I’ve heard women blame themselves for playing tennis, having sex, cleaning the fridge, standing too close to the oven. Part of it is social conditioning of women to feel responsible for other people’s welfare from a young age. But there’s also something very human about us trying to make patterns out of chaos and lack of reason, and miscarriage and fertility are saturated with so much ‘not knowing’ and lack of concrete reasons. Only half of the couples leaving a recurrent miscarriage clinic after all their tests will be given a reason why.

I also think there something instinctively maternal about women blaming themselves for their conceived child-to-be not making it to term. That’s maternal love, its heartbreaking. I get it, I’ve been there and I can still have painful pangs of guilt.

 

What other emotions do you tend to see from couples going through baby loss?

Sadness, anger and fear are so common, especially with recurrent miscarriage. I’ve never spoken to someone who has experienced loss, who has had a subsequent pregnancy without worry and anxiety. You’ve had the joy of a belief in a pregnancy ending in a live birth robbed from you. Envy is also really common, although no-one likes to admit it or talk about it freely. But in my support group if we open up the conversation around envy, there is relief in the whole room and many join in that they feel it. I often name it for women in my consulting room too.

 

Do you see many couples at your support group?

Yes, more and more. I think some women feel that they’re dragging their husbands along and that they’re coming for their sake, but actually once you get them talking, you can see that they needed it to. They find their place.

Often one man speaks out and then other men respond –  there is still this entrenched social coding that men think they have to be tough for their partners, and even a shame that they aren’t ‘fertile’ too.

 

Do you see a difference in the ways that men and women cope with this sort of loss?

I explore this – the male partner experience – in my book in some depth. Women, of course, are the ones going through the physical onslaught – some miscarriages can happen at home and maybe quick, and others can be quite traumatic and prolonged. Either way – they can incapacitate a woman. So the male partner often has no choice but to support her.

When I had my miscarriages, my husband had to shelve his sadness and fear to get me painkillers, or bundle me in the car and drive me to the hospital or even, on one occasion, change my drip bag when no nurses were available. But this frequent role that men have to take can unwittingly convey a message to those around them that they are coping well, when they may not be.

A midwife I know tells me it’s common for a man to burst into tears after he steps outside into the hospital corridor to avoid being vulnerable in front of his partner.

 

You write in your book about the concept of ‘intuitive’ and ‘instrumental’ grieving, can you explain a little about that?

An  ‘intuitive griever’ tends to be female  – and she cries and seeks support from her friends, and she might reach out to the enormous TTC community, or friends and family.

But men, typically described to be ‘instrumental grievers’ in the bereavement literature tend to act on their feelings differently, by ‘doing’ – I spoke to a woman who manages the support line at SANDS and she says it’s very common for men to ring up and say ‘Hi. We lost our baby. I’m just wondering if there are any places for the marathon?’

 

Do you think part of that is also social conditioning – linked with gender norms of men being ‘strong’?

Yes, definitely. Although things are changing, men still find it very difficult to be vulnerable. This, in turn,  feeds into how they grieve and how they cope with stress. I see a common tension between couples emerging when a woman might feel her partner isn’t hurting as much as her.  But often he’s not fine, but he doesn’t want to upset her. He thinks he should be strong for her. But actually a lot of women feel like they want their husband to be vulnerable, to cry, to share in that pain. So sometimes I get couples to understand that about each other and it can be a great kind of relief that it’s been a miscommunication.

 

I know you’ve worked a lot with same-sex couples – how does this dynamic change in that instance?

I think the grief of female partners can be ignored or minimised on the basis that women tend to be good at being ‘intuitive grievers’ – the idea being that as a woman she’ll be really good at looking after her partner and herself. But this can be frustrating and isolating. Also, because she might not have had any genetic link to the baby that was lost, somehow that diminishes her status as a griever. But it’s important to remember that she was a mother too.

 

Your book and your work is so instrumental in opening up discussion around baby loss, what is your hope for the future in this space?

I strive for the imagined place where conversations about miscarriage are deep, broad, curious and normalised and it isn’t the case that we remark on the compassionate treatment we had, or kind words from friends or our employer or our medical staff. Wouldn’t it be brilliant if we didn’t need  Adia, or my book or the Miscarriage Association? But in the meantime, we need to continue having these important conversations.


We are so grateful to Julia for sharing her experience and insights with us and for continuing to open up the conversation on this important topic. You can order The Brink of Being now, and if you would like more advice on baby loss, you can read our recent blog on missed miscarriage where you can also find a recording of our recent Digital Meet Up all about miscarriage.

If you would like further support, you can join Adia for free today, where you will be able to access advice directly from our panel of fertility experts as well as nutritional plans and guided meditations created specifically for those struggling with infertility.

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