#CryingShame

This post is about emotional support for people suffering infertility — I hope you’ll read through to the end, but if you don’t, please please check out the Fertility Network UK #CryingShame fundraiser , to ensure every patient across the country going through fertility issues gets the individual support and advice Fertility Network UK offers.


Infertility sucks

Infertility isn’t just hard. It isn’t just sad. It isn’t just difficult. Please understand that infertility is deeply traumatic and utterly harrowing.

One study by Fertility Network UK found that that 90% of infertile couples reported feeling depressed, while 42% reported feeling suicidal.

A study looking specifically at the psychological impact of failed IVF found that 94% of the women surveyed had experienced symptoms of depression and anxiety, whilst 13% had experienced suicidal ideation.

In another study, 50% of women said that infertility was the most upsetting experience of their lives.

One study even found that levels of depression and anxiety in infertility patients were comparable with cancer patients.

A recent study found 4 in 10 women experienced symptoms of post-traumatic stress disorder after a miscarriage. Other studies show the depression and anxiety experienced by many women after a miscarriage can continue for years.

In short, infertility and pregnancy loss are life-changing and life-defining.

I was lucky that during my fertility journey I experienced excellent patient support — which isn’t just about paying lip service to patient support by offering a token session of counselling. For me it’s about the everyday interactions — kindness from clinicians and clinic staff, being responsive to questions, and recognition that whilst we’re just one patient of many, for us this is one of the most important and challenging experiences of our life. Understanding from family and friends was key, and finding my tribe in support groups on and offline kept me sane.

So what does good support for someone going through infertility look like? 



How to support patients

The HFEA have developed a new Code of Practice for clinics in the UK, which now has a dedicated section specifically for patient support: specifying clinics’ responsibilities not only to make counselling accessible, but to develop a patient support policy that codifies how the clinic will ensure all staffprovide “appropriate psychosocial support” before, during and after treatment

Some suggestions of what I think ‘appropriate psychosocial support’ should look like:

  • Clear written information: given at the start of treatment to provide clear information about the proposed treatment to prepare patients about what to expect; detailing all emotional support available, and the importance of accessing it for patients’ mental health, and signposting relevant organisations and resources.


  • Defined follow-up protocols: for people who have successful and unsuccessful treatment, as well during the two-week wait.


  • Open-door access to fertility counselling and coaching: as both a support system to help patients cope, and a sounding board to help patients find ways to move forward with their goals.


  • Support groups: mixed, male, female and specific interest (e.g. LGBT parents, solo motherhood) — either in-clinic or clear signposting to those that already exist elsewhere (such as the excellent support groups and workshops by Fertility Network UK, and other organisations such as the Donor Conception Network


How to support family or friends suffering infertility


There’s no universally right or wrong answer: the ‘right’ thing will vary immensely from person to person — and indeed the same person on different days. However, I found that there are some general dos and don’ts that are pretty safe bets and will make an enormous difference to a friend or loved one suffering from:

  • Say ‘I’m sorry’ Give us a hug and say ‘I’m so sorry’. 


  • Do not try to solve the problem There’s nothing you can say or do to fix this, so stop trying to do so.


  • Don’t tell us about miracle babies Please, please don’t offer advice or tell us about someone else’s miracle story — all you can do is bear witness to our pain. Just listen & acknowledge our distress Don’t feel you have to do anything other than listen. 


  • Don’t tell us what to do or what to think or what to feel. Just listen to us, and allow us to be sad and angry at how unfair life is. Be there, let us know you care, that you’re there, and that you want to understand our feelings and needs. Acknowledge that it’s an unimaginably cruel situation and let us offload


  • Don’t diminish our suffering by telling us we’re being oversensitive, or that we should be over it by now. It’s OK for us to not be OK. 


  • Try not to take it personally if we withdraw from social situations or distance ourselves from you. It’s not that we don’t care — we do. We’re just trying to protect ourselves from being hurt even more than we already are. 


  • Don’t ignore it Recognise our devastation and ask us if we’d like to talk about it. Don’t be fooled that our smiles mean that everything’s fine. We might not want to talk about it — but just letting us know you’re thinking of us can go a long way.


  • Reassure us that you love us  Don’t ever say that it’ll happen eventually — because you don’t know that it will (and it might not). Reassure us that you love us and will support us no matter what — that we are still loved and important, regardless of whether we become parents.


How you can make a difference

It’s a #CryingShame that people struggling to conceive experience depression and anxiety without adequate support. It’s a #CryingShame that there is also a severe lack of funding for patient support in fertility services.

Which is why Fertility Network UK have launched a 30 day fundraising appeal to ensure every patient across the country going through fertility issues gets the individual support and advice Fertility Network UK offers.

Fertility Network UK provide invaluable information and support for people going through an infertility journey, and they are a brilliant cause I’m proud to support.

Please, please give generously, and please, please share the campaign. So many people are suffering in silence — you probably know someone who’s suffering but who may not feel brave enough to speak out about what they’re going through. Fertility Network UK supports thousands of people who are living this in the shadows, and by supporting their fundraising and their initiatives, you will be making a difference to so, so many people.

Maybe even someone you know and love.


[ Some of this content was previously published in pieces I wrote for Fertility Fest and for Metro’s Fertility Month]

The Sunday Times Style: Selling Hope: How Wellness Cashed In On Fertility

I was thrilled to speak to journalist Sophie Wilkinson for a brilliant article she wrote for The Sunday Times Style magazine about IVF add-ons: how the lack of NHS funding has pushed women into the private market, and how the baby business is only too happy to profit from selling us unregulated add-on treatments.

I added my own personal take, which was that it's essential that we have all the facts to make up our own minds and make a truly informed decision. My wonderful consultant didn't want to sell me tests or treatments he didn't believe were of any benefit - but I was a woman on a mission and was determined to throw everything and the kitchen sink at our treatment. And I'm glad I did, even though we weren't ultimately successful.

For me it was less about believing that these treatment would help us to have a baby, but rather than I was planning for what would happen if and when we ended up with no baby - so that I knew we couldn’t look back and think ‘what if?’

However plenty of Drs and clinics aren't so scrupulous - relying on patients to check out the HFEA website & traffic light system to find out if there's any evidence base for the treatments they're being recommended.

This is simply not good enough.

How can we give informed consent if we're not in possession of all the facts?

Check out the full article here:  Selling Hope: How Wellness Cashed In On Fertility

Check out the full article here: Selling Hope: How Wellness Cashed In On Fertility

Metro: Women are reclaiming the word ‘barren’ to talk about their fertility issues

Barren has been used for centuries to stigmatise childless women as inferior and worthless members of society, often shunned as witches, their barrenness a sign of physical and moral deficiency.

But in various pockets of the internet, women on infertility forums can be found jokingly referring to ourselves as barren – instead of passively accepting its negative connotations, we’re re-appropriating it as an empowering identity label.

So proud to have contributed to this brilliant article in Metro about my mission to reclaim the word 'barren' and why it represents resilience and strength of character, and belonging to a sisterhood of some of the bravest, funniest, most kick-ass women you could ever wish to know.

I might have blubbed a bit when I read that the author had spoken to some women in a PCOS support group about reclaiming 'barren', and that a newly diagnosed woman said that coming across this website had moved her to tears:

I’m newly diagnosed, sort of getting past the sad bit and looking at language/strategies to help me deal with it.

I just read the Uber Barrens Club homepage and I’m in tears. This is EXACTLY what I’ve been looking for.
 

Share your story

I’m currently trying to write a book that challenges the fantasy infertility narrative of endless positivity and happy endings, by sharing real women’s stories about what it’s really like to struggle with infertility and pregnancy loss. It’s a club that no-one wants to join: but knowing that you’re not alone can provide solace and support in the darkest times.

My goal is to represent as many different perspectives as possible: if you’ve experienced infertility or pregnancy loss — whether your journey is current or past, whether successful or not — I’d be honoured if you’d consider sharing your story anonymously.

Adia Health: Fertility MOT

I was invited by Adia Health to share my experience of getting a Fertility MOT for their blog - what they can do, what they can’t do, and what I think mine did for me. My top tip would be to consider coming off hormonal contraception to learn to understand your natural cycles before you’re ready to start TTC, because it can mask a lot of issues and it's so important to understand your own body and track your fertile signs.

Thanks to Adia for inviting me to share my experience on their blog - do check it out here

Defining Abuse in Assisted Reproductive Technology

What are the untold harms of Assisted Reproductive Technology (ART)?

Where does good clinical practice tip over into bad?

Where and how are patients exploited by clinicians and the commercial fertility industry?

These were some of the issues explored at a fascinating workshop about 'Defining abuse in ART', held on 3rd June 2019 , that I was honoured to have been invited to speak at.

The organisers of this event, Dr Nathan Hodson and Prof Susan Bewley, recently published a systematic review of abuse in ART that proposes a typology of the different ways patients may experience mistreatment during fertility treatment - including the exploitation of women (& how this intersects with other disadvantages), unnecessary or ineffective intervention, and avoidable harms to both patient and child.

Bringing together clinicians, bioethicists, social scientists, historians, human rights lawyers and patient advocates (alongside the fantastic Pamela Mahoney Tsigdinos: author of Silent Sorority and founder of ReproTechTruths), the goal of the workshop was to examine how professionals and the public can use this idea of ‘abuse in ART’ to question, critique and understand the worst excesses of the IVF industry.


Patients are often depleted or consumed.

Treatment can use up patients because they buy into the stories sold by company websites.

These websites are glossy and bright and optimistic and often do not fully or faithfully represent patient experiences. I feel this is dishonest and disrespectful to patients.

But is it abuse? ... All I know is I felt deceived, used up, and outraged by supposedly great men.
— BMJ - Sexuality, Reproduction, and The Etymology of Abuse

My talk shared insights from the infertility community to explore the patient perspective: because whilst medicine is about evidence and data, the experience of going through fertility treatment is one of hope and heartache - and in order to develop effective safeguards against abuse, clinicians have to better understand the patient mindset, and better empathise with our experience.

It was a really engaging day with so many incredibly smart people, chewing over some really tricky questions - to which are no easy answers, but I'm really looking forward to seeing how this initiative progresses.


For more on this initiative check out

BBC 5Live: The Emma Barnett Show - IVF Special

I was thrilled to appear on an IVF special of The Emma Barnett Show on 23rd April 2019, joining a group of 19 women - with over 100 cycles of IVF between us (costing over £500,000) - to share stories of heartache, hope, disappointment, strength and resilience, and give a raw and honest picture of the reality of IVF. It was a really emotional morning - but a whole lotta love in the room.

It was an honour to be able to take part in such an important discussion, with such a brilliant group of IVF warriors (my segment starts ~11 mins)

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.


Fertility Fest 2019: The Invisible Man

My latest blog post for Fertility Fest is about the male experience of infertility and why men's voices are so often missing from the narrative.

Is infertility seen as the woman’s problem? Are men’s emotional needs seen as less important? Are men uncomfortable talking about this issue? Are we uncomfortable (or disinterested) in listening to men talking about this issue? .

More and more men are starting to break cover, and step out of the shadows to talk more openly about male infertility — to make the invisible man visible. At Fertility Fest 2019, ‘The Invisible Man’ will feature artists and experts to explore all these issues: including performances from film-maker Tom Webb, theatre-maker Toby Peach, singer songwriter Bob Strawbridge and rapping reverend Elis Matthews, followed by a Q&A with Sheryl Homa, Director of Andrology Solutions and Michael Close, Director of LogixX Pharma, chaired by writer and journalist Sarfraz Manzoor.

The Invisible Man

Please do read the full post on the Fertility Fest blog, share, and let us know what you think

Related posts

For more on male factor infertility, check out some of my previous writing:

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…

The Fertility Forum @ RCOG

On 30th March I was delighted to attend the Fertility Forum, an event hosted by the Royal College of Obstetricians and Gynaecologists (RCOG) in collaboration with the British Fertility Society and the HFEA, to bring the public and fertility professions together for a day of talks, seminars and discussions for anyone affected by fertility issues. The sessions covered a broad range of topics in a non-commercial setting - the focus was on providing accurate, evidence-based and unbiased information, where no one was trying to sell you anything.

You can watch videos of the presentations from the day here on the new RCOG Fertility Hub

 

Confusing fertility advice

I was delighted to work with the RCOG press office to support the release of their latest research, which highlights the extent to which confusing and contradictory fertility advice is sparking unnecessary worry among UK women - and was picked up by media outlets including Huffington Post:

 

The Fertility Podcast

On the day itself I took up the mic as a roving reporter for The Fertility Podcast, to ask some of the speakers to bust some fertility myths.

You can listen to the podcast here, or find it on Apple Podcasts, Google Podcasts, Stitcher or Acast

And there are full details of the show notes here: The Fertility Podcast: Myth Busting at the RCOG Fertility Forum