infertility

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

Surviving Mother's Day

Anyone who’s experienced fertility problems will be only too aware of the many grief landmines scattered throughout the year.

There’s the sporadic ones — such as christenings, baby showers, family get togethers. Then there’s the seasonal ones — such as Christmas, or even back to school day or world book day (when social media becomes wall-to-wall proud parents sharing photos of their gorgeous children). Then there’s the big one. The whopper. THE DAY.

I’m talking, of course, about Mother’s Day.

A day you so desperately want to be able to celebrate, but fear you never will.

A day that reminds you that you’re excluded from the parents’ club, pressed up against the window peering in from the outside, longing to join in.

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

A day that can be a double whammy for some people — if, like me, you’ve lost your mother, it can feel like the cruellest day of the year, with grief seemingly coming at you from all angles.

3 years ago I was pregnant when Mother’s Day rolled around, and I remember hoping with every fibre of my being that the following year I’d be a card-carrying member of the mummy club.

Sadly, that wasn’t to be — as we found out the following day that our baby had died. I’m still waiting for that membership card to arrive.

#SurvivingMothersDay

It’s really, really shit.

There’s no magic solution for how utterly, horribly shitty it feels.

But for what it’s worth, here’s a few tips that I hope may help to navigate this shittiest of shitty days.

 

Feel all the feels

It’s OK to feel angry. It’s OK to feel jealous of others. It’s OK to feel sorry for yourself. You are not a bad person if you feel like this. You’re human. It’s hard enough already without beating yourself up as well.


Do whatever you need to do

Do whatever you need to do to get through the day. Be kind to yourself.

Indulge in some radical self care.
 
Treat yourself to something self-indulgent. Get a massage, go for a really boozy lunch (preferably somewhere likely to be child free), go away for the weekend.

Or if you want to hide away, and sit in your tracksuit bottoms on the sofa with chocolate and Netflix, that’s totally OK too.


Arm the defences

Short of not leaving the house (tempting), it’s impossible to avoid seeing & hearing about Mother’s Day seemingly every -bloody-where But there are a few tactics that can help to turn down the volume:


Digital detox
Social media. Just don’t go there. Nothing good will come of going on social media on The Day.

Reading joyful #feelingblessed posts of seemingly idyllic Mother’s Day homemade cards & breakfast in bed will not help

Reading posts from mums recounting how they’ve had a crap Mother’s Day & feel unappreciated will not help.

Just switch off & unplug until the coast is clear.


Emails
When it comes to the flurry of Mother’s Day emails (from mailing lists that despite endless GDPR emails you somehow still seem to be subscribed to) promoting gift ideas & discounts, some brands have recognised that this can be a really difficult time of year for many, and given subscribers the chance to opt out of any Mothers Day specific communications

Big shout out to brands like Bloom & Wild and Superdrug

 

(And check out #notomothersdaypr for a great initiative from Berenice @ Walk In Our Shoes to encourage more brands to do the same!)

In the mean time, setting up an email filter to send any message with the word ‘Mother’s Day’ in the subject to Spam can be highly effective!


#YouAreNotAlone

I wish I had words of comfort, but all I can say is to remember that you are not alone — and this too shall pass. If nothing else, once it’s over, you don’t have to worry about it for another 12 months…

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

Fertility Fest 2019: Our Mission - Public Discourse

My latest blog post for Fertility Fest 2019 is the 2nd in a 3-part series about Fertility Fest’s 3 big aims

The second pillar of our social mission is something we're all hugely passionate about - improving the level of public conversation about infertility and reproductive science

Since the first Fertility Fest in 2016, there's been SO much change in public awareness of infertility, and how we talk about it. You only have to look at what's happening in this community - with podcasts such as The Fertility Podcast, Big Fat Negative, The TTC Life Raft, Cat Strawbridge’s #EveryStoryMatters Instagram Lives (amongst many, many other initiatives in this fantastic insta-family) now at the vanguard of tackling the issues around this subject

This post looks at the new taboos that still need to be settled, and the difficult questions we need to ask about how changes in reproductive science are changing the way the human race is going to be made

Issues like genetic technology, surrogacy, donor conception, alternative families and womb transplants - just because we can does that mean we should?

Our Mission: Public Discourse

Please do read the blog post, share and let us know what you think - really hoping to see as many of you as possible at the Fest in Apr/May!

Fertility Fest 2019: Our Mission - Patient Support

My latest blog post for Fertility Fest 2019 is the first in a 3-part series about Fertility Fest’s 3 big aims

The first pillar of our social mission is a subject that’s very very close to all of our hearts - improving emotional support for patients.

There’s been tremendous progress, and now the HFEA Code of Practice has a dedicated section specifically for patient support: specifying clinics’ responsibilities to develop a patient support policy that codifies how the clinic will ensure all staff provide “appropriate psychosocial support” before, during and after treatment.

The code of practice says that “patient support should be patient-centred” - but what does patient-centred actually mean?

Our Mission: Patient Support

We want to develop a patient centred manifesto for what we believe clinics should be offering to fulfil this requirement - please do check out the blog post, and let us know what you think should be added to the list.

BBC Woman's Hour: IVF and the Two Week Wait

I was honoured to appear on BBC Woman’s Hour this morning to discuss IVF and the Two Week Wait with with Prof Geeta Nargund and Izzy Judd - and to then continue the discussion with (the legendary!) Jane Garvey in a bonus segment for the Woman's Hour podcast.

It was brilliant to share our insight into the deep anxiety of the 2ww from the patient perspective, which I hope will help listeners to better understand what a friend or loved one having IVF may be going through - and more generally to contribute to more open and honest public conversations about infertility.

Bonus segment

I also really enjoyed being able to discuss some of the wider issues around infertility beyond simply the 2ww in the additional segment we recorded, addressing some of the more difficult questions:

  • IVF success rates - how it's not a magic cure

  • why 'don't give up' can be a pernicious comment - as though stopping treatment makes you a quitter

  • how the language of infertility unintentionally attributes blame

  • how much of a woman's reproductive anatomy is named after men

  • how the toxic nature of infertility infects every part of your life

  • the physical, financial and emotional impact of infertility

  • why 'just adopt' isn't helpful

  • a shout out to my beloved husband who is my rock, my best friend, and my all-time favourite human

  • the importance of support from the AMAZING community of women on social media and online forums (that's YOU GUYS!)

Jane also read out some incredibly moving emails from listeners sharing their stories - they are so heartbreaking and so eloquent, and stories that deserve to be heard.

 

How to listen to the show

You can listen to the podcast below, or download via the Woman’s Hour website (click on the ‘download’ button for the full version incl. bonus podcast segment - available for 30 days only), Apple Podcasts (Ep 10th Dec 2018, IVF Waiting), Acast, Stitcher, or wherever you get your podcasts from.

The main segment is at the start of the show (13 mins), and the extra bonus segment begins @ 44:40 (10 mins):

 

Highlight Clip

Don't have time to listen to the full episode?

Here's a 3 min snippet from the broadcast

And a short clip from the bonus segment:

 

Getting ‘dildocam’ into the official Radio 4 lexicon

I’d asked the show producer whether I could say the word ‘dildocam’ live on Radio 4 (because what would a discussion about IVF be without it), and jokingly tweeted about this.

I did not expect Jane Garvey to reply on Twitter to say that it was indeed acceptable vocabulary to use on air. Good to know. 

For the avoidance of any doubt, the official BBC Radio 4 account then chipped in with official confirmation of its acceptability. 

After which occasional Woman’s Hour host Emma Barnett (who has written about her own experience of IVF in the Sunday Times) added that she was delighted to have this word available for future scripting.

Glad to have enshrined ‘dildocam’ in official Woman’s Hour vocabulary.

My work here is done!

Metro: It’s not just down to infertile couples to solve the adoption crisis

Why don’t you just adopt

My third article for Metro’s Fertility Month series examines how It’s not just down to infertile couples to solve the adoption crisis

Anthony Douglas, head of Cafcass (the public body representing children in care), said in a recent interview with the Daily Telegraph that the growing success of IVF has meant fewer people will consider adopting children:

IVF used to be around 7% successful and now it’s around 30%.

So as a choice, adoption is competing with lots of other ways of having children.

My biggest bugbear with the ‘it’s all the fault of selfish IVF couples’ argument (amongst many) is that it positions the adoption crisis as an issue that’s solely down to people with fertility problems to solve.

IVF isn’t a quick and easy fix either to conception, or to solving the adoption crisis - and it doesn’t help solve the latter to pretend it does.

Adoption is about finding homes for children, not children for infertile couples. And pretending that if selfish infertile couples stopped having IVF the problem would get sorted does a disservice to infertile couples, and to children in care.

This article is deliberately provocative, as I’ve tried to challenge the hypocrisies around this issue straight on - because I’m frankly fed up of the IVF bashing (and the perpetual double standards for infertile vs fertile couples.)

Infertile couples are asked ‘why don’t you just adopt?’

To which I would respond, ‘Why didn’t you just adopt?’


Have your say

Are you fed up of being told ‘why don’t you just adopt?’

I’m writing a book that challenges the fantasy infertility narrative of endless positivity and happy endings, by sharing real women’s (and men’s) stories about what it’s really like to struggle with infertility and pregnancy loss.

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.

Metro: Why treatment for male infertility is failing both men and women

Men matter too

My second article for Metro’s Fertility Month series examines how treatment for male infertility is failing both men and women

Men are massively overlooked in the fertility experience more generally: but the inadequate care for male infertility - inadequate diagnosis, meaning inadequate treatment - is also harming women, as ICSI treatment bypasses the male problem to treat the issue in the woman’s body.

Normally I rail against articles which focus on the miracle baby success stories, but in this instance these examples - real examples, from real couples - were pretty critical for the overall argument (spoiler alert: that if treatable problems were diagnosed and treated, this might increase the chances of success, or eliminate the need for invasive ICSI altogether.) These stories are used to demonstrate tangible examples where proper care has made a tangible difference to the outcome. Which I hope will spark discussion and debate!

It’s an issue that’s woefully ignored in both public discourse and within the fertility industry itself - so I hope that this article will help to encourage more open conversations about this issue.

Male infertility is a growing problem on a global scale — so when are clinicians going to start taking it more seriously?
 

Have your say

I’m writing a book that challenges the fantasy infertility narrative of endless positivity and happy endings, by sharing real women’s (and men’s) stories about what it’s really like to struggle with infertility and pregnancy loss. My goal is to represent as many different perspectives as possible — including the male perspective.

If as a couple you’ve experienced infertility or pregnancy loss (regardless of which partner has received the infertility diagnosis, if any)— whether your journey is current or past, whether successful or not — I’d be honoured if you’d consider sharing your story anonymously.

There are questionnaires for both the female and male perspective — and I’d particularly love to hear more from the guys!

Speaking on LBC about infertility and miscarriage

I was listening to the Maajid Nawaz show on LBC on Sat 10th Nov, where he had a segment on infertility and miscarriage - following Michelle Obama’s interview where she revealed her own experience of IVF and miscarriage, and her feelings of isolation and shame.

He posed lots of questions to listeners for the phone-in: including whether we agreed with Mrs Obama that women did indeed suffer in silence - as well as the issue of delayed childbearing and egg freezing for women who wanted to prioritise their careers.

I called in while the fantastic Ruth Bender-Atik from the Miscarriage Association was on the line, and the researcher put me directly through to have my say.

Here’s the recording of my call - where you can hear me talking about:

  • the fact that even when people do talk about their infertility struggles or miscarriages, it’s almost always after they’ve been successful - because society doesn’t want to accept that not all problems are fixable (and as a result there’s a belief that IVF is a sure-fire guarantee)

  • challenging him about the reasons why women freeze their eggs - as the no 1 reason women freeze their eggs is because they’ve not met the right partner, not because they’re 'selfish career women’

  • why I’d recommend counselling and finding your tribe if you’re going through similar struggles

Guardian: I’m a feminist. So why does infertility make me feel like a failure?

I wrote an article for The Guardian published on World Fertility Day, during UK Fertility Week about the impact of infertility on my female identity.

Read the full story here:

I’m a feminist. So why does infertility make me feel like a failure?


Reactions

Unlike my previous Guardian op-ed about miscarriage, this article did have comments enabled - obviously there were the predictable ‘why don’t you just adopt’ comments, but there were some thoughtful and compassionate comments also, that I thought worth highlighting:









It was a really challenging, but very rewarding piece to write - if this has struck a chord, I’d be honoured if you’d consider sharing your story