miscarriage

Baby Loss Awareness Week 2019

This year's Baby Loss Awareness Week was a total whirlwind, a bundle of emotions, and I think I'm still trying to process it all.

Guardian & Daily Mail: The 12 week rule

Things kicked off two days before the start of #BLAW2019 when an article I’d written about miscarriage and the 12 week rule was published in the Guardian on Mon 7th Oct - more about this and how it blew up (becoming a ‘new campaign’. according to Dame Jenni Murray!) in my previous post.

Mourning rituals

The following day, on Tues 8th Oct, I attended the funeral of a dear friend, who’d passed away very suddenly and unexpectedly: the day itself was somewhat of a blur, but on reflection I can’t help but think about mourning her death and celebrating her life juxtaposed with how we commemorate losses for those family members who never joined the family tree.

Tortoise: Why don’t we talk about miscarriage?

Immediately after the funeral I attended a Tortoise ThinkIn event titled Why don't we talk about miscarriage? Tortoise describe their ThinkIn events as ‘the engine of open journalism’:

A ThinkIn is not another panel discussion. It is a forum for civilised disagreement. Modelled on what we call a ‘leader conference’ in the UK (or an editorial board in the US), it is a place where everyone has a seat at the table. It’s where we get to hear what you think, drawn from your experience, energy and expertise. It’s where, together, we sift through what we know to come to a clear, concise point of view.
— Tortoise

Editor Polly Curtis reached out to me on Twitter to very kindly invite me to the event after she’d read my article about the 12-week rule - but I only learned afterwards that she has a particularly personal perspective on this subject, having written about her own experience of 8 devastating miscarriages in the Guardian in 2015. She chaired the discussion, featuring 3 terrific special guests

Here’s some highlights from a really inspiring, thought-provoking evening (& a full recording of the event is available here):

 

Moncrieff

Then on Thu 10th Oct I was thrilled to be invited onto Moncrieff (apparently one of Ireland's most popular afternoon shows!) on Newstalk FM to discuss the 12-week rule with presenter Seán Moncrieff - you can listen to the interview on the Newstalk website (approx 12 mins - not deliberate!) We spoke about why the 12-week rule is harmful, why I want to change the way we talk about pregnancy loss, and also a little about my own experience of infertility and miscarriage (and why I think it's time to reclaim the word 'barren'!)

 

The cycle of life

In a cruel accident of timing, I was discussing my first miscarriage on national radio on the very day that would have been that baby's due date - and in another life we might have been celebrating a 3rd birthday.

In another life we wouldn’t have been lighting two candles at 7pm on the 15th October, for the global #WaveOfLight, where grieving parents across the world light candles to remember all the babies who have died too soon.

But in this life our journey took a different path. And just as we mourn loss, we celebrate new life. The morning my Guardian article came out, just before the start of #BLAW2019, I received the most wonderful (and unexpected) news from my brother. My beautiful nephew had come into the world 4 weeks early, and I was now an aunt. I am utterly besotted and overwhelmed with love for this tiny human, and so overjoyed he is safely here.

A microcosm of life in one week - birth, death, memories, new experiences, happy, sad and everything in between. Life, eh?

Tommy's: Tell Me Why

So lovely to catch up with  @jenniemonologues ,  @mrskmeaks  &  @thisisalicerose

So lovely to catch up with @jenniemonologues, @mrskmeaks & @thisisalicerose

Thank you to Tommy's for inviting me to the launch of their Tell Me Why campaign, calling for more research into the causes of miscarriage, stillbirth and premature birth.

A shocking 71% of parents are not told why their baby has died in pregnancy or has been born prematurely - and in many cases, doctors simply don’t know why it’s happening.

Without a medical reason for their stillbirth, miscarriage or premature birth 82% of women worry that it was caused by something they did.
 

WHY we need more #PregnancyResearch

We need more research and investment in reproductive health.

Stillbirth, miscarriage and premature birth, in contrast to most other medical conditions, are linked to deep feelings of guilt and failure in women.

The lack of medical explanation for pregnancy complications and loss underpins this self-blame.

Not knowing WHY leaves parents feeling alone, powerless and full of worry for future pregnancies.

Tommy’s research proves that we can find answers and prevent babies from dying before, during and after birth.

But we need to know more and do more.

We need to be able to tell many more parents why it happened to them and how we can prevent it happening again.

Parents deserve to know WHY it happened. Only then can it be prevented in the future.

 

#TellMeWhy miscarriage happens

As a patient, I was honoured to visit The Miscarriage Clinic at the Biomedical Research Unit in Reproductive Health at University Hospital, Coventry - which is part of the Tommy's National Centre for Miscarriage Research -the UK’s first national centre dedicated to miscarriage research). Prof Jan Brosens and Prof Siobhan Quenby specialise in researching the role of the endometrium (womb lining) in implantation and miscarriage - which is the very issue that is the root cause of my infertility.

Sadly the issues with my endometrium were too severe to be overcome: Prof Brosens told me I was ‘the weirdest case’ he’d ever seen, and that there was no point in continuing treatment, as my womb was simply unable to support a pregnancy.

But the samples of my womb lining that were taken during my visits to the Coventry clinic contributed to the body of research to understand the role of the endometrium in infertility and miscarriage.

And it’s this research which has informed the development of three key checkpoints on which a successful pregnancy depend, as outlined in this brilliant animation:

Although I never ended up with my rainbow baby, I’m so proud to have perhaps contributed in some small part to the incredibly important research that Tommy’s are doing.

Prof Quenby gave the most incredible talk at the event, highlighting some of the key developments and innovations being developed out of her clinic, which are already saving babies lives.

 

#TogetherForChange

Pregnancy loss isn’t ‘just one of those things’.

1 in 4 people will lose a baby during pregnancy or have a premature birth.

It’s not OK that so many parents cannot be told why their baby died. It’s simply not good enough to say ‘It wasn’t meant to be’.

Please, please check out Tommy’s #TellMeWhy campaign hub, watch the films, share the message, and talk, talk, talk about miscarriage, so we can challenge these misconceptions and fight for more research.


Observer Book Review: The Brink of Being

I was honoured to be asked to review Julia Bueno’s fantastic new book about miscarriage 'The Brink of Being’ for the Observer.

It’s estimated that one in four pregnancies ends in miscarriage, and yet it’s an experience that remains largely ignored  –  a grief that the world seemingly doesn’t know how to talk about. In The Brink of Being, psychotherapist Julia Bueno draws on her own personal experience, stories from her consulting room, and interactions with experts, to examine miscarriage within its broader cultural, medical and historical context  – encouraging us to think more, and think differently, about pregnancy loss.

It’s incredibly moving, and I’d recommend it to anyone who’s been affected by miscarriage, or who would like to better support someone else who has.

You can read the full review here.


The WRISK Project: Does oral sex prevent miscarriage?

The WRISK project is a fantastic initiative from the British Pregnancy Advisory Service (BPAS) - in collaboration with Heather Trickey at the School of Social Sciences at Cardiff University & the Wellcome Trust - that's aiming to improve communication of risk messages relating to pregnancy:

Women who are planning a pregnancy or who are pregnant receive many public health messages that are intended to guide their decision making.

For example, they receive advice about what to eat, drink, how much they should weigh, and what medications they should or shouldn’t take. These messages are intended to improve outcomes for babies and mothers.

However, there is growing concern that messages do not always fully reflect or explain the evidence base underpinning them, and that negotiating the risk landscape can sometimes feel confusing, overwhelming, and disempowering.

This may negatively affect women’s experiences of pregnancy and motherhood, and be exacerbated by a wider culture of parenting that tends to blame mothers for all less-than-ideal outcomes in their children.
 

#blowjobgate

And this set of crazy headlines - reporting the findings of a recently-published study that suggested that ‘Regularly swallowing your partner's semen could protect against miscarriage’ - couldn’t be more confusing, overwhelming, and disempowering.

Because what discussion of an incredibly painful topic such as pregnancy loss needs, is jokes about giving head…

And creating even more guilt and shame for women who are already likely to be blaming themselves for their losses, with manipulative pressure to perform sex acts.

Initially I assumed this was ‘just’ lazy, clickbait journalism, or an April fool - but it turned out to be a genuine study from researchers at the University of Leiden, published in the Journal of Reproductive Immunology.

I took to Twitter and posted some incisive commentary on this story…

(Nah, of course I didn’t - I took to Twitter and posted a massive rant about what a load of emotionally manipulative bullshit it was)

…and asked fertility experts weigh in with their thoughts on the (in)validity of this study.

The team at the WRISK Project saw my thread (<cough> rant), and got in touch with me to ask me if I’d be up for writing a guest post about this tabloid frenzy - which I jokingly started referring to as #blowjobgate - for their blog.

Which I did.

And you can read the full piece here: The WRISK Project: Does oral sex prevent miscarriage?

 

The TL;DR version

If you can't be bothered to read the article, here's the TL;DR:

  • No, blowjobs do not prevent miscarriages

  • Swallowing semen is not a cure for pregnancy loss

  • This study is misogynistic garbage

Thank you for coming to my TED Talk

 

The response

The experts who weighed into the discussion on Twitter were universally critical of the study, and expressed serious concerns about the review process that led to this being published by a supposedly reputable journal (which you can read about in the full piece) .

I was absolutely terrified that as a non-scientist I was going to get something really, badly wrong - so the positive response to the article from the likes of BMJ Sexual & Reproductive Health was incredibly gratifying:

I’m so angry that such bad science, causing so much pain and distress, was published in the first place - here’s hoping that they don’t get funding for a follow up study…

Tommys: #WeAreAllMums

I was honoured to contribute to Tommy’s Mother’s Day campaign ‘We Are All Mums’: Tommy’s recognise that Mother's Day can have very different meanings to each person, so they asked women who’ve all had very different experiences of motherhood to answer one question:

What does Mother's Day mean to you?

‘Mother’s Day is a grief landmine of epic proportions for those of us who’ve suffered infertility and pregnancy loss. It’s a day you so desperately want to be able to celebrate, but fear you never will.

’A day that reminds you of what you’re missing out on — if that cycle had worked, or you hadn’t miscarried, you’d have a something-year-old child by now, and Mother’s Day would be a day of celebration, not mourning. And if like me you’ve lost your own mother, it’s a day you dread more than any other.

’To my sisters in loss - my heart goes out to you. I wish I had words of comfort, but all I can say is to remember that you are not alone . Be kind to yourself, and do whatever you need to do to get through the day. This too shall pass.’

Read other women’s stories at the Tommy’s #WeAreAllMums page

My interview on Big Fat Negative podcast

I was so thrilled to have been invited on to the bloody amazing Big Fat Negative podcast to wang on about all things infertility related - I had an absolutely blast with hosts Emma & Gabby, thanks for having me on guys! (Warning - lots of swears. Soz)

For anyone who’s not already familiar with this fabulous podcast, Big Fat Negative is the podcast about IVF, infertility and the trials of trying for a baby. It’s very funny, very moving, very insightful, and (especially when I’m on) extra sweary.

We chatted about the many twists and turns of my IVF journey, baby loss and how I got through it all because of the amazing community of like-minded people who supported her.

Listen online here, or check out on Acast, Apple Podcasts, Spotify, or wherever you get your podcasts

Guardian: Do we need a new language for miscarriage?

candlesBLAW18.jpg

[ Originally posted on Medium ]

I wrote an article for The Guardian about the language of miscarriage for Baby Loss Awareness Week 2018. I know. The bloody Guardian!! I sent off a pitch obviously not expecting that they would get back to me, let alone accept it — but they did. 

First thought: Holy poo.

Second thought: Don’t mess this up. This is really really important.


I decided to write about the language of pregnancy loss, because it’s just so wedded to the notion of failure. Even the term ‘failed pregnancy’ and ‘miscarriage’ suggest blame — as though we didn’t do our job correctly, we didn’t ‘do’ pregnancy right, we dropped the baby. When it’s likely that we’re already desperately questioning if there’s anything we could have done to prevent it; if it happened because of something we did (or didn’t do); if we did something to deserve this; if we’re to blame — the language only serves to exacerbate this.

I only had a 700 word limit (which is NOT very much!) so there’s lots and lots that didn’t make it in — but I’m so very grateful for everyone who contributed to my research (more below) and for everyone who’s continuing the conversation. 

This post is to share some of these incredible contributions —  from both experts I spoke to, and the real women who shared their stories.

This is the article that ran:

And OMG it actually ran in print. Like in a real newspaper with my name and my photo and everything. And it said I was ‘a writer about infertility and pregnancy loss’. Which I guess technically now I’ve written a paid piece for a national newspaper I suppose I am!

(NB: the headline differs between the online and print version — neither was mine, both were written by the subeditor. The online version started as the same headline as in print, but was changed during the day, as they experimented with different copy to generate more clicks.)

OMG that’s me in the paper: The Guardian — Thu 11th Oct 2018

OMG that’s me in the paper: The Guardian — Thu 11th Oct 2018

Words and photography by me: The Guardian — Thu 11th Oct 2018

Words and photography by me: The Guardian — Thu 11th Oct 2018

It was also pretty mindblowing to see the article when it was first published front and centre on the main Opinion page (apols for self-indulgence) — but so happy that a piece for Baby Loss Awareness Week was being given such prominence. 

(and incredibly proud that I now have a Guardian contributor’s profile page!)

opinionpage.png

I am so, so honoured to have been given the opportunity to write about this issue, and I’m thrilled that it generated such a positive response. A number of different charities shared the article: the comments were both heartbreaking to read, and incredibly heartwarming that so many people are speaking out about their experiences of pregnancy and baby loss — because it’s only by talking that we will #BreaktheSilence.

These people were brave enough to share their own experiences, their voices deserve to be heard.


Thank you to Tommy’s for sharing the article on Instagram — these women were brave enough to share their stories, and I thank them for making their voices heard:


I miscarried at 13 weeks August 29th: when it was described as “removal of pregnancy tissue” or “evacuation of pregnancy” it made my skin crawl.. it was our baby not just a clinical procedure. We were given excellent care from the support unit but once handed over to the surgical team to have surgical management all compassion was lost sadly.


Absolutely agree people need educating on this! We were told I probably wasn’t pregnant anyway, even though we’d already had a scan with a heartbeat, that it was probably not a ‘real’ pregnancy. I went on to have a D&C, which didn’t remove the baby. I was at home alone when I realised, when I called the EPAU unit they laughed down the phone and said it was probably a clot and could I bring it in in a Tupperware?! This is the only time in my life I have been able to get pregnant and it still stings 5 years later!


I lost my baby 13 years ago and felt so alone, so misunderstood and took a long time heal and made my subsequent pregnancy so stressful because the care just wasn’t available. I’m so relieved that the world is finally talking about these issues and that other women will get better support than I did #BLAW2018


The lost part always makes me angry as well I didn’t lose him, I wasn’t irresponsible: he was my son not my f*****g car keys!!!


Having an MVA (manual vacuum aspiration) for my third miscarriage consistently referred to by the doctor as an ‘abortion’ was surprisingly hard to hear. It’s outdated language that should never be used in a miscarriage situation. I would urge everyone to write to the hospitals in question to highlight anything from badly chosen words/phrases to poor care. Hospitals take complaints seriously and the message is passed to the relevant teams so they can try avoid it for the next poor woman/couple… Please everyone do this!


It was terrible. I had to have two ERPC for one miscarriage as they left “retained products” which were left to “rot” inside me as the consultant said!!! Devastating


I lost my baby at almost 12 weeks and the nurses who looked after me were amazing, not once did they mention trying again (other than saying it would be a possibility) they called my baby, a baby. They spoke with me about my grief and did everything they could to get me the last scan picture we had taken (baby had already passed but it was important for me to have it). On the women’s health unit, when it closes for the day any patients who stay overnight have their care managed by midwives. I couldn’t think of anything more cruel than a woman being looked after by a midwife when she no longer had a baby. The midwife had no compassion for the situation and ignored me most of the night. The doctor I saw the next day was vile! When I cried she was so patronising and told me “I know, I know, it’s almost like grieving..” I kept telling her to stop calling my baby a retained product and in the end I told her to leave. It needs to be dealt with more sensitively.


I lost my boy at 17 weeks last year. They came in to take him and I said I wanted to spend time with him and hold him. I was told something along the lines of ‘what do you want with it, it’s not a full baby yet’.


The Miscarriage Association were also kind enough to share the article on Instagram, and again, people were courageous enough to share their own stories:

Although the NHS team who looked after me through two missed miscarriages and MVA procedures were so incredible and lovely the language they have been tutored to use was in my opinion wholly inappropriate “pregnancy tissue” rather than baby. Heartbreaking. I’m so fortunate that I am now pregnant again and in this happy instance they were more than happy to call the baby ‘a baby’ from our six week scan onwards. It doesn’t make sense.


The language around pregnancy loss has to improve. I will never forget, and am still haunted by, the lady who did our scan at 7 weeks and informed us that “this pregnancy does seem to be on its way out”. It haunts me most because she had a trainee with her. And that pregnancy was our much longed-for child.


I get really upset when medical professionals refer to my miscarriage as an abortion. It wasn’t an abortion. Having a miscarriage was not my choice.


I’ve had mine referred too as products of conception too. And spontaneous abortions. Why don’t they call it what it is? MISCARRIAGE. A loss of a BABY. Just really makes going through a loss 100% harder.


This was one of the worst parts of my whole experience. I completely broke down when my anaesthetist finally came to me and said ‘I’m so sorry for your loss’…the only member of staff out of probably 10/12 is dealt with on the day of my surgery that actually acknowledged what we were going through. Heartbreaking.


I was asked have I passed the product yet I said what product you mean my baby that had a heart beat. I had a go at the doctor for the way they worded it.


When we suffered a missed miscarriage of twins 2 years ago I opted for surgical ERPC. During the consent process the junior Doctor asked me “What do you want us to do with the biological matter after the procedure?” As a nurse (unknown to him) I went through the roof at him for his lack of empathy and instructed him to leave my room immediately. I then requested the registrar (female) came to consent me. In my professional capacity I do understand that the terminology was used as we were before the 24 week mark, however as a Mother I was devastated at the loss of my twins 4 weeks apart, not to mention the whole host of emotions I was dealing with. His words will forever haunt me. I wrote a letter of complaint but only received a generic reply. It is time that things change because a baby is a baby from the second you know you’re pregnant regardless of gestation and fetus viability.


Having been told I’d had a “failed pregnancy” and that I needed a removal of the “products of conception” I relate to this so much. I was then made to go and sit in a waiting room full of pregnant women! All I could focus on was the word “failed”, as if I’d failed or my body had failed. It’s truly awful that there is so little compassion when telling a woman her baby has no longer got a heartbeat.


This happened to me in June from an A&E doctor while I was trying to process the already devastating news that I was losing my baby. I understand they have been trained to think clinically but that Product of Conception was my little son/daughter who I had aspirations for and who I couldn’t keep alive


Fertility Network UK also shared the article, and there were yet more people sharing their own stories in the comments:

I hate this phrase. Last year I went through an horrendous miscarriage requiring hospitalisation. All the time the Drs keep referring to our baby as a product of conception. Regardless of how far along you are, as an individual that embryo is your baby and part of you. You’d had all these dreams and thoughts about your future life with your baby, and in a heart beat it’s taken away from you. A ‘product of conception’ is not the right thing to say!


I had no idea how common miscarriages are until it happened to me and the nurse just sat there and told me that one in 4 pregnancies end this way. Like it was no big deal. Keep doing what you’re doing, you’re helping so many women feel less alone


The op I had to remove the foetus/ baby from my uterus was referred to as “evacuation of retained products of conception”. Awful


I was overwhelmed by the reaction on social media — so sad that so many people had personal experience of this issue, but so happy that people were responding so positively to the article itself, and were comforted by this distress being openly acknowledged.

I was even more overwhelmed, and so very moved, to discover on Saturday that there was a whole section on the Guardian letters page on Sat 13th Oct for readers’ feedback (thanks to being tagged on Instagram and Twitter by two of the people who’d written in!)

I am so very very pleased to have been able to contribute to the debate in this issue:

Letters page from the Guardian — Sat 13th Oct 2018

Letters page from the Guardian — Sat 13th Oct 2018

Thank you to Rosie, Mike and Shirley for taking the time to write in and share their stories

Thank you to Rosie, Mike and Shirley for taking the time to write in and share their stories


There was so, so much I didn’t have room to say — here are some of the highlights of my research that didn’t make it into the finished piece:


Speaking to Ruth Bender-Atik from the Miscarriage Association

The Miscarriage Association are doing phenomenal work to improve the quality of care that patients receive from clinicians when experiencing a miscarriage.

They used to run study days and workshops for healthcare professionals, and now offer learning resources on their website for HCPs that are free and easy to use — including online training videos and good practice guides, such as this one about how to talk to patients and their partners about management of miscarriage:

The Miscarriage Association are also part of the National Bereavement Care Pathway: a collaboration with other charities and with the support of the Department of Health and the All Party Parliamentary Group on Baby Loss.

The objective of the project is to ensure that all bereaved parents are offered equal, high quality, individualised, safe and sensitive care in any experience of pregnancy or baby loss, be that Miscarriage, Termination of Pregnancy for Fetal Anomaly, Stillbirth, Neonatal Death, or Sudden Unexpected Death in Infancy up to 12 months.

It started with a pilot of 11 sites in wave 1, and is now live in 32 site across England, with pathway guidance for professionals on each of the five experiences of pregnancy or baby loss — and have published an interim evaluation of the project after six months live in the initial wave.

Ruth told me that the hospitals who are trying it are enthusiastic, and that she hopes it will become mandatory to adopt the guidelines and training.

Training about sensitive communication with patients really needs to start in medical and nursing colleges — and crucially, for clinicians to be able to deliver great care and act in a caring way, they need to be cared for and supported themselves.

I was thrilled to learn about the NBCP, which is a fantastic step to deliver on-the-ground practical improvements to the emotional support bereaved families receive. It’s easy to say ‘we need more sensitive care’, but this project is actually working to deliver this, which is so encouraging.


Speaking to Helen Williams from the University of Birmingham

Helen is a researcher working with the National Centre for Miscarriage Research , leading a research initiative for Tommy’s dedicated to improving miscarriage support for women, partners and family:

Miscarriage isn’t just a physical experience: it is an emotional event both for mum, her partner and those around them. However, a lot of the care given after a miscarriage only focuses on physical recovery, without providing women with the emotional support they need.

We want to better understand the different feelings and ways of coping women experience after miscarriage, so we can find the best way to help those who have suffered loss. We also want to find out about the experiences of those working to care for couples that have miscarried, as well as how employers respond to miscarriages amongst their employees.

Firstly, we are carrying out a large review of other studies on women’s experiences of early miscarriage. But we want to go further, and ask women themselves. At the moment we are working with nurses and midwives to figure out the best way to sensitively approach women about this difficult topic.

The things we learn from this project will help us in training doctors, nurses and midwives to give women and their partners the care they need following loss, both emotional and physical.


More here: ‘The Lived Experiences of Miscarriage

The project itself is exploring exactly the issues identified in the article, and I’m so thrilled that Tommy’s funding is going into researching delivering emotional, as well as clinical, care. 

Helen said they’re at the very beginning of the project, but that their initial area of focus is going to be on the male experience — because men are so neglected in delivering miscarriage support. Women are more likely to talk about their experience with their friends, but there’s no equivalent forum for men to have a space to be vulnerable and talk about their feelings. The aim is to to formulate or co-design with the participants what a helpful intervention might look like.

I think this is absolutely fantastic, as miscarriage is a bereavement that affects both parents — yet so much of the support is geared around the woman’s needs, with the man’s emotional needs often barely acknowledged. 

Helen and I are going to stay in touch, and I look forward to hearing how the research progresses.


Speaking to Julia Bueno, a psychotherapist and counsellor

Julia Bueno is a psychotherapist and counsellor, with a particular interest in supporting lost parenthood: supporting individuals and couples who struggle to conceive, or have experienced a loss during pregnancy or after birth.

Julia was absolutely amazing to talk to — sadly she has personal experience of pregnancy loss, and brings this to bear on the support she provides to those grieving their own losses. She used to run a support group for Fertility Network UK, and now helps to facilitate a monthly support group for the Miscarriage Association

Next year she has a book about pregnancy loss coming out, called The Brink of Being — which I can’t wait to read.

She had so much fascinating insight into providing emotional support for miscarriage, but if I had to highlight one key takeout it would be this:

The language of pregnancy loss does have a chance of improving not unless and until we start talking about it more.

Language evolves by playing around and words will get traction once we find a term that fits. Once we start muddling through — and maybe getting it wrong — then we can start to formulate better language and start to get it right.


Other people I spoke to

I’m enormously grateful to my amazing consultant Mr Colin Davis — who provided my husband and I with the most phenomenal clinical and emotional care throughout our fertility treatment and miscarriages — for letting me grill him with a barrage of questions, helping me to understand so much more about the clinical terminology around pregnancy loss. 

Massive thank you to Dr Larisa Corda for her time to offer her perspective on the language of pregnancy loss from the clinician’s point of view.

And thank you to the team @ Tommy’s for sharing such useful insight about the incredible work they’re doing.

And most of all, thank you to all the women and men who shared your stories with me — you are warriors, and are making such a difference by talking so openly about your experiences of pregnancy and baby loss.

#YouAreNotAlone and we are #TogetherForChange

Infertility and the tyranny of positivity

1_tZfw3PTuCcC_iZdCTkBlMg.jpg

Why you don’t have to join the cult of positive thinking when you’re struggling to have a baby

[ Originally posted on Medium ]

Infertility is shit.

It’s really, really shit.

(Spoiler alert: this isn’t going to be crammed with motivational affirmations about infertility. There also will be swearing. Lots. Though you’ve probably already guessed that bit.)

Infertility can be traumatic, heartbreaking, brutal, and utterly unrelenting.

An oft-cited study exploring the psychological impact of infertility found that depression levels in infertility patients were comparable with patients who had been diagnosed with cancer.

Another study found that 4 in 10 women experienced symptoms of PTSD following a miscarriage.

(Anyone who says ‘ The baby making phase was fun!’ clearly never experienced the joys of infertility.)

FUN TIMES!

The cult of positive thinking

Yet whenever people talk about infertility, any meaningful acknowledgement of the deep emotional distress it causes seems utterly conspicuous by its absence.

The only acceptable narrative is one of positivity. Entertaining any negative thoughts is a cardinal sin. Under no circumstances should you allow yourself to get stressed, sad or anxious. You must remain hopeful and optimistic at all times.

Why telling an infertile person that relaxing will help them get pregnant is a monumentally unhelpful thing to say

Mention that you’re suffering from infertility, and you can pretty much guarantee that someone will mention that fabled medical cure of RELAXING.

(If you’re playing infertility bingo, ‘just relax’ is up there as a high scorer, but has just been edged out of the top spot by everyone’s favourite ‘why don’t you just adopt?’)

If you’ve ever experienced infertility, comments like these will be all too familiar:

ThingsPeopleSayToInfertilePeople:

Just relax and it’ll happen.

What we hear:

I’m treating your bona fide medical problem with contempt — and yes I know I wouldn’t dare tell a diabetic/cancer sufferer/person with one arm to just relax, but for some reason I think that will fix YOUR medical problem quite easily.

ThingsPeopleSayToInfertilePeople:

My cousin’s secretary’s sister’s boyfriend’s neighbour and his wife had been trying for 17 years, and had 300 rounds of IVF, and she had blocked tubes, and he had one bollock and a low sperm count, and they were told she’d never get pregnant — so they gave up trying, and went on the adoption list, and went on holiday, and relaxed, and got drunk, and OMG she got pregnant naturally with quadruplets. Never give up!

What we hear:

I have no idea what I’m talking about medically, but I’ll advise you anyway, and spout spurious examples of unrelated cases just because it’s the only story I know. I also think your decision not to continue with ridiculous heart-wrenching and expensive treatments means you obviously don’t want it/aren’t trying hard enough. Shame on you.

ThingsPeopleSayToInfertilePeople:

Maybe you should take a break — I bet if you just relax, it’s bound to happen. It happened to me. We’d been trying to conceive for 6 months with no luck — then we went on holiday and forgot all about it — and BAM, I fell pregnant. It’ll happen for you when the time is right, I know it will.

What we hear:

My 6 months of not-getting-pregnant-from-some-sex is exactly the same as your years of infertility and multiple rounds of physically, emotionally and financially harrowing fertility treatment. I think that you’re trying too hard, and that all this stress is what’s preventing you from getting pregnant. Surely if it’s not happened by now, even with all this intervention, you must be doing something wrong.

Public Service Announcement: Infertility is classified by the WHO as a ‘disease of the reproductive organs’.

Causes for which include issues like PCOS, endometriosis or fibroids, polyps, blocked fallopian tubes, congenital uterine malformations, pelvic adhesions, high levels of uterine natural killer cells, various autoimmune issues, sperm defects (incl. count, motility, morphology or DNA fragmentation), and chromosomal problems such as balanced translocations (amongst numerous others).

Which, apparently, can all be addressed by the incredible power of positive thinking.

(Curiously, you don’t tend to hear relaxation suggested as a miracle cure for diseases like cystic fibrosis, motor neurone disease, or cancer.)

In my own case, given we’ve tried 4 IVF cycles (& 7 cancelled cycles); pre-implantation genetic screening; a wealth of weird, wonderful, painful (and expensive) investigations; thousands and thousands of £££ on medications via every conceivable route of administration (pills, patches, pessaries, suppositories, subcutaneous injections, intramuscular injections, intravenous drips and intrauterine infusions, to be precise); 2 hysteroscopies, plus the opinions of the best fertility specialists on both sides of the Atlantic (and still no baby)…

…at a guess, I suspect your expert fertility treatment plan of ‘going on holiday & getting pissed’ (whilst no doubt enjoyable) PROBABLY ISN’T GOING TO FIX MY BROKEN WOMB LINING, AND OVERCOME THE FACT I WILL NEVER BE ABLE TO CARRY A CHILD.

(Also, I’ve already tried holidays and getting rat-arsed drunk. Oddly enough, I’m still barren.)

Why it’s even more insidious when clinicians tell you to relax

It’s one thing when ‘well-intentioned-but-desperately-unhelpful’ friends — who don’t know any better — tell you that the reason you’re not getting pregnant is because you’re stressed. But it’s downright cruel when fertility clinics promote the notion that ‘if you’re not thinking positively then you’re decreasing your chances of success’ (the implication being that if treatment fails, you’ve only got yourself to blame).

One leading London fertility clinic states on their website:

There’s no question about it: Your emotional health may on some level affect your ability to conceive. Our thoughts and the way we think determine our emotional and physical state. I feel that negativity and negative thoughts can, at some level, act as a block when trying for a baby.

Another UK clinic advises that:

Positive thinking can be a very powerful tool when it comes to improving your chances of the IVF process resulting in conception.

Stress and anger however, can have a counterproductive effect on IVF treatment, so it’s in your best interests to relieve yourself of these emotions.

Stress has a direct relationship with a woman’s menstrual cycle and the fertility process and may affect your chances of a successful IVF treatment.

A clinic in the Middle East (on a page ambitiously titled “The Power Of Positivity: Believe You Can And You Will!”) counsels against even talking about your fears & doubts:

Surround yourself with people who can listen to you and your journey that have more of a positive approach and avoid discussing the subject with those who make you feel negative.

So, if you’re not already feeling utterly distraught about the entire, soul-destroying process and the relentless failure, now you can beat yourself up about the fact that even the Drs reckon it might be your fault that you’re not getting pregnant — because you’re not being sufficiently cheery and optimistic.

Fertility clinics are a part of a multi-million pound industry, profiting from the delivery of medical treatments to treat physical conditions — treatments which are anything but relaxing. If clinics genuinely believed that stress had a meaningful effect on success rates, they’d be flogging relaxation therapies as a core part of treatment protocols. They’d be prioritising fertility counselling as a critical stage of any IVF cycle — instead of a token afterthought, paying lip service to the HFEA code of practice requiring all UK clinics to provide patients with (optional) access to counselling.

Much better instead to push the positivity agenda (and the blame) back onto the patient. A buy-one-get-one-free special bonus offer on guilt — giving you the chance to feel like a double failure! You thought a problem with your body was the reason you couldn’t have a baby? Well now it turns out the problem’s also with your mind! When you’re picking yourself up off the floor after another failed cycle, desperately looking for answers — perhaps instead of questioning whether the clinic could have done anything differently, maybe you’re to blame? Maybe you sabotaged your chances of success, because you were so fearful and anxious of yet more failure?

Why you don’t need to stress about being stressed

The BMJ (one of the world’s oldest and most well respected medical journals) conducted a broad meta-analysis of the extant research into the thorny question of whether poor psychological wellbeing impacts on fertility outcomes. The paper’s authors concluded that the evidence demonstrated that this theory is — to use the appropriate technical lingo — UTTER BOLLOCKS.

Yep. The snappily-named “Emotional distress in infertile women and failure of assisted reproductive technologies: meta-analysis of prospective psychosocial studies” gathered data from 14 separate studies, which followed over 3,500 women undergoing fertility treatment. It concluded that:

The findings of this meta-analysis should reassure women and doctors that emotional distress caused by fertility problems or other life events co-occurring with treatment will not compromise the chance of becoming pregnant.

See that? Emotional distress will not compromise the chance of becoming pregnant.

Suck on that, positivity vultures!

No doubt the Daily Mail will continue to gleefully run stories like ‘Stress can double the risk of infertility for women’ (unsurprisingly opting for a sensational headline that contradicts the study’s actual findings— helpfully summarised by the NHS here: Study fails to prove effects of stress on fertility)

Perhaps in the future more conclusive evidence will determine that there is in fact a clear causal link between anxiety and infertility outcomes. Maybe we doall need to jump on the positivity bandwagon to have any chance of having a baby.

But for now, Dr Jacky Boivin — who authored the BMJ paper above — advises:

If people are thinking of using some kind of intervention [to treat stress] — and you can go on the Internet and find a million things claiming they’ll get you pregnant — they should be motivated to use them to improve their quality of life rather than to increase their pregnancy rates.

Why it’s OK to reject the cult of positivity

Stress may not cause infertility, but infertility definitely causes stress.

And for many of us, rather than alleviating this anxiety, the tyranny of positivity can make it much, much worse.

I did a shedload of mind-body therapies, all recommended by the top fertility gurus as vital stress-busting techniques to improve one’s chances of success.

These included: fertility acupuncture, positive affirmations, hypnofertility, fertility reflexology, visualisation and guided imagery, specialist meditation for infertility, Mayan abdominal massage, mindfulness colouring books and gratitude lists (amongst others).

  • Did I find them enjoyable and relaxing? No.

  • Did I get frustrated that I was supposed to be feeling relaxed, but didn’t? Yes.

  • Did I feel anxious that I wasn’t ‘doing them right’, because apparently they worked for everyone else? Yes.

  • Did I feel anxious about feeling anxious, because that negated the whole point of doing all this in the first place? Yes.

  • Did I resent them as a colossal waste of money? Yes.

  • Did I ever at any point honestly believe that they would have any impact whatsoever on the outcome of my treatment? No.

I’m a massive cynic. I consider myself a (broadly) rational person. I don’t give much credence to ‘alternative’ medicine. I’m the sort of person who rails against homeopathy, and urges people to read books like Bad Science to understand the importance of evidence-based medicine.

But despite all of this, against my better nature, I did ALL THIS FERTILITY WOO ANYWAY. Because I felt guilty that if I didn’t try hard enough to become a super-chilled, mega-Zen, über-positive, gold star ‘ray of sunshine’ infertile, that it would be my fault if (when) the treatment failed.

The cult of positivity became a stick with which to beat myself.

A positive outlook can be really, really valuable for your overall mental wellbeing. But it’s not a miracle panacea for getting (& staying) pregnant.

Personally, I wish I’d focused more on radical self-care, and less on worshipping at the altar of positivity.

What actually helped me most of all was finding my tribe. Women who were going through the same experience, who understood exactly how I felt. Who shared my exasperation with the whole Pollyanna masquerade. Who acknowledged how unbelievably shit it was, and didn’t offer sentimental platitudes. Who listened without judgement .Who offered empathy, sardonic laughter, sisterhood and support. Who made me feel less alone.

There is no right or wrong way to ‘do’ infertility. Just do whatever you need to do to survive.


If you liked this, then you might also like…

This fantastic episode of the Fertility Podcast about #relaxgate — the backlash against British TV Dr Hilary Jones for his spectacularly uninformed and insensitive comments to a caller who was asking for advice after 5 unsuccessful rounds of IVF: suggesting that (yes, you’ve guessed it) she should ‘just relax’ — and that if she stops thinking about it, a miracle surprise pregnancy might happen naturally. Which, as you can imagine, didn’t go down too well amongst the infertility community.

Well worth a listen:

The Fertility Podcast: Episode 131 — Just relax. What not to say to someone on their TTC journey