The Times: The pros and cons of online fertility forums

‘Understanding Fertility’ was a special report published in The Times on 27th March 2019, exploring a wide range of topics around fertility - including a feature about the pros and cons of online infertility forums to which I contributed.

I shared a lot of thoughts with the writer, singing the praises of the online communities that have kept me going throughout my journey - women who’ve kept me going in the darkest times, my fellow members of the club that no one wants to join.

As is often the way, only a snippet of the interview made it into print, and predictably the one quote that was selected has been included in the ‘against fertility forums’ section!

This article is a great overview - but I just want to set the record straight that my personal experience of online fertility forums has been overwhelmingly positive. The privilege of getting to know so many incredible women, across a number of different online communities - who’ve provided such immense sisterhood, solidarity and support - has been the silver lining I take from a very dark cloud.

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 - Fertility Education

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

The third pillar of our social mission is something that’s so, so important - to improve fertility education. Young people need to learn more than how ‘not to get pregnant’, they deserve a more rounded and robust understanding of human fertility so they have the best chance of creating the families they want in the future — with or without children, with or without reproductive science.

(The irony that I spent 2.5 years working on the government teen pregnancy prevention strategy, credited with halving the rate of teenage pregnancies (& one of the most successful public health campaigns ever) and yet I turned out to be infertile, is not lost on me!)

There’s been some incredible progress with the development of the Fertility Education Initiative and, most significantly, the fact that fertility education and menstrual health are going to be on the new revamped curriculum for sex and relationships education from 2020 onwards. But now we need to advocate for what we think that curriculum should cover.

Our Mission: Fertility Education

Please do read the 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 - 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.

#FITW - Fertility In The Workplace

Infertility affects every aspect of your life: physically, emotionally, romantically, financially, socially — professionally. The impact on your career can be enormous.

We suffer in silence

Infertility and miscarriage are so, so common, but so many of us suffer in silence— not even telling friends, let alone work.

We fear we’ll be judged

And given how common it is, how many of the colleagues and managers to whom we’re reluctant to disclose, will actually have direct personal experience of infertility or miscarriage — and will offer support and empathy, rather than judgement?

 

#FertilityInTheWorkplace

Fertility Network UK have launched a fantastic initiative to address this issue- Fertility In the Workplace, aiming to provide much-needed and hugely-important support for both employees and employers regarding workplace issues while having fertility treatment.

They asked me to write a blog post sharing my own experience of #FertilityInTheWorkplace - this piece covers not only my own experiences, but shares the experiences of many other women who kindly shared their stories with me to write about this issue.

My experience of Fertility In The Workplace

The multiple rounds of IVF, many, many cancelled cycles and several surgeries I had during my treatment had an enormous impact on my daily life — as a freelancer this presented its own challenges (and benefits).

I work in-house at the companies I work with, as an embedded member of the team — but I’m a contractor, not an employee. 

The pros:

  • As a freelancer, this gave me cards that I wouldn’t have had as an employee — I was able to set the terms of an engagement up front. When discussing the project I took on before my first cycle, I disclosed that I would be undergoing some medical treatment at some point in the coming months, and that this would require some time out of the office for appointments and procedures. I said I would minimise disruption as far as possible, but that if this was going to be a major problem for them, then it would be best if they looked for someone else to work with — ‘take it or leave it’.

  • I didn’t have limits on no. of days off (although, also a con — see below)

  • When combining treatment with in-house work became unsustainable, I didn’t have to work a long notice period — I was able to down-tools much more easily than if I’d been an employee

  • I did end up disclosing that I was having IVF after the first round, because it was easier to explain why I was having moretreatment and needed moretime off than to come up with an excuse — but this was also made easier because there was less risk. They didn’t employ me so they didn’t need to worry about whether or not I got pregnant. 

  • Being open about what I was going through was such a relief, as I didn’t have to come up with cover up stories for why I was disappearing so often, or worrying about someone seeing syringes in my handbag and thinking I was a junkie, or wondering why I suddenly seemed to resemble a space hopper (thank you bloating, oh the irony that medical treatment needed because you can’t get pregnant causes you to look pregnant when you’re not actually pregnant).

  • Once I opened up, so, so, so many people revealed that they’d also gone through fertility treatment or experienced miscarriages — which I’d never have known if I hadn’t ‘come out of the closet’ (so to speak)

  • I found that being open also opened up the opportunity to educate colleagues about IVF: when people make thoughtless comments, it’s usually because they don’t know any better. If someone has never experienced fertility treatment themselves, and we don’t ever talk about it, how can we realistically expect most people to truly understand what we’re going through? 

  • The conspiracy of silence becomes a vicious cycle —we’re reluctant to talk openly about going through infertility treatment because of a (perceived) lack of understanding of the issue — but keeping it secret only reinforces the stigma of infertility as a taboo subject.

  • In my experience people generally do mean well, and want to be supportive. It’s harder for them to be supportive if they don’t know that we’re going through a difficult time! 

The cons

  • I don’t get paid time off. Hours off are easy enough to make up, but days or weeks off? No work, no money. 

  • It can be exhausting to have to be a one-person-teachable-moment machine. However well-intentioned that insensitive comment about how their friend’s sister’s boyfriend’s neighbour’s hairdresser’s cousin had blocked tubes, and her partner had one testicle and a low sperm count, and they were told they’d never have children, and had done 17 cycles of IVF and had 14 miscarriages, and they stopped trying, and went on the adoption list, and went on holiday, and got drunk, and relaxed, and OH MY GOD THEY NOW HAVE MIRACLE QUADRUPLETS (never give up!), it can wear you down.

    See also when someone suggests trying acupuncture for the 15th time, and why don’t you just adopt? <sigh> As my husband said to me once, it’s not like people are going to run off and tell their mates ‘Hey guys! GUYS, guess what? Turns out adoption isn’t as easy as I thought, don’t tell your infertile colleague to ‘just adopt’, it’s really not that straightforward’. So sometimes it’s OK to just say ‘That’s great for them, but that’s not relevant to my situation’, or ‘That’s a very personal question, I’d rather not justify my choices right now, thank you.’

I was lucky that my experience of being open about treatment was largely positive, and that being freelance gave me flexibility I probably wouldn’t have been afforded. But that’s not the case for many women.

 

Real women, real stories

Employers can only offer support if they know that an employee is going through treatment — but employees will continue to be reluctant to disclose unless they know they will be supported.

I’m working on a book project about what it’s really like to experience infertility and / or pregnancy loss, and I’ve received hundreds of contributions from real women sharing their own experiences — many women have shared their own experiences about disclosing at work, and their’s haven’t been so positive:

“In my previous role, my boss actually disclosed to another colleague that I was having IVF despite me having asked she keep it confidential — not very impressive considering she was the HR Director”
“I hid it for a long time, knowing full well that as soon as I came clean I wouldn’t be put up for promotion because they would assume I would be ‘fixed’ and go on maternity leave straight away.”
“I haven’t told my work we’re trying to get pregnant - as soon as they hear that they’re already thinking of the next person to do your job. And as I’ve had losses in the past, who knows how long it will be until I actually get to take maternity leave?”
“One of the reasons I haven’t told many people is because of how pregnant women are treated in the workplace - I don’t want to be ‘thought out of my job’. This started to happen just after I got married, like a colleague asking when I was going to go on maternity leave as her contract was about to run out.”
 

Managing time off

If I’d been an employee rather than a freelancer, managing the burden of time off for treatment would likely have been significantly harder — as these women described:

“Under my work’s policies IVF falls under elective procedures - which means holidays rather then medical leave”
“I think even the progressive employers’ fertility policies are unequal. If they don’t limit paid sick leave for other medical problems, why do they limit it for infertility which (as I’ve discovered from you) is classified as a disease? Since women go through most of the treatment, even if the problem is with their partner, this affects us disproportionately.”
“I left my career 2 years ago because I simply needed more time off to do treatment - it became impossible to manage trips to the clinic. I very much regret leaving a job that I loved.”
“I’ve actually put my career on hold for 2 years (& counting!) to try and make this work. I loved my job, I was good at it, but couldn’t do it at the same time as so much treatment. It’s a real killer of course when you have nothing to show at the end of it”
“I actually had to leave my career due to the stress that it put on me. The hours I would have to put in to take off one day were insane. I couldn’t imagine having to do IVF around the schedule I used to have”
 

Lack of career progression due to staying in a ‘safe’ job


That said, I can absolutely relate to the feeling of stagnation — I took on projects that weren’t necessarily the most fulfilling, because it was impossible to juggle the emotional and physical burden of treatment with something more demanding

Lots of women described staying in unsatisfying roles due to:

  • not wanting to take on a more challenging role to avoid additional stress

  • not wanting to take on a more challenging role because of not feeling able to give 100% to the job

  • not wanting to leave an established role because of having built up trust with a boss or team, affording some leeway on flexible working

  • not wanting to leave an employer with a favourable IVF or flexible working policy, to facilitate having treatment

  • not wanting to leave an employer with a favourable maternity package, in the hope of getting pregnant

“I don’t feel able to go for promotions or development opportunities, as I don’t know how the timing would work out, and I would be too worried about the pressure in a new role.”
“In all honesty it’s kept me in a job I’ve outgrown because they are very understanding and I’m worried if I move a new company wouldn’t be so accommodating. It definitely makes me feel stuck and a bit deflated at times”
“I feel it has halted me moving on anywhere for years…I am stuck in a job I don’t like as we need money to pay for treatment, and they’ve been flexible with appointments”
“The benefits and flexibility, and the social capital I’ve accumulated will keep me at my current job for now. No one at work knows, but we have flexitime so I can come and go and take time off whenever I need no questions asked.”
“I have stayed still for 3 years now, “just in case” I get pregnant that moment I hand my notice in and lose my maternity benefits. I have not gone for any training/qualifications because we may need that cash for private treatments. With everything else going on, I don’t feel I have the energy to start anything new work-wise and cope with that stress.”
“My career stalled as I stayed in a job I hated initially because of maternity benefits (that reason didn’t last long!), then because of having fertility investigations and treatment, not feeling able to ask a new employer for time off work for IVF.”
“My career has been on hold as I’ve let opportunities pass by because “I might get pregnant”.
I feel like I’ve constantly got big heavy rocks in my stomach. The sadness physically hurts at times. But on the outside I appear happy.”
“I’ve stayed in a job and living somewhere that I want to leave, because the job offers a good wage, and the area I currently live offers more IVF cycles than the area that we want to move to.

I definitely feel like a failure career wise, which doesn’t help when you are also failing at starting a family - but ultimately it’s better the devil you know”
“Kept me at the same organisation for years in the eternal hope I will get pregnant and need maternity leave”
“I have changed jobs away from a career I loved but was stressful - I know my new job is less well respected and people think I’ve given up but it’s too late now.”
 

Impact on performance

I still had significant and frequent crises of confidence - worrying that my mental and physical state meant I just wasn’t performing ,  something that many women described:

  • This is a really really tricky one — you don’t want your employer to assume that you’re going to be unreliable, but sometimes you do really really struggle because of everything you’re going through.

  • However I also think that’s true of many many difficult things in life, and we do bring our whole selves to work — so any emotional trauma in anyone’s lives is going to have an impact.

  • We’re all human, we’re not robots, and everyone who’s going through a hard time deserves compassion and support.

“I have checked out. Infertility is so exhausting that it feels like a full time job in itself. I have been so distracted with tests, big decisions and picking myself back up after 2 back to back miscarriages last winter - without anyone at work having a clue. I know I haven’t been performing at my best but how do you explain why if challenged?

I feel a bit trapped and in total limbo…. I don’t feel I can tell work because I don’t want to be treated any differently in terms of being given new opportunities because I could be gone at any moment.”
“I feel that it has affected my mental health and this has affected my ability to really focus on my career, because I haven’t had the mental energy to think about my professional development.

I feel I am now in a position where I feel stuck - my recent appraisal showed I barely met any of my goals because of things going on in the last year, and I feel deflated because I don’t feel like I’ve achieved anything in my work recently.”
“I ended up leaving due to the stress, despite having an understanding boss the stress and depression really got to me and I felt I wasn’t performing properly - and so many other people around you just don’t get it.”
“Not enough understanding or support for my stress levels surrounding this, and massive anxiety - meaning I am signed off for the next month and have missed out on a promotion & lost credibility”
 

Getting it right

I honestly don’t know if the companies I worked for had policies regarding fertility treatment — my guess is probably not, based on the conversations I had. However that’s not the case for everyone: shout out to the brilliant bosses and exceptional employers — making a really difficult time that much easier

Remember, happy and well supported employees are productive employees who perform better!

“My employer and colleagues were probably as good as it gets with infertility. They all supported and protected me.Paid bereavement/medical leave after my losses would have been amazing however - I took 2 weeks off unpaid for each of my losses.”
“I work in an office so on one side my work has been fantastic: I have told my team and Manager, and they have been incredibly supportive.”
“My manager had 4 miscarriages and 4 IVF rounds so totally gets it - she has allowed me flexible hours so I can attend all my appointments.

After my miscarriages I had enough sick leave, but it would have been nice to have been proactively told that I could use bereavement leave as well, as that didn’t occur to me.”
“By telling my colleagues I felt able to take things slower especially after the miscarriage, and they understood why I was a bit grumpy and weepy.”
“I have a very supportive boss and team and get five days paid IVF leave a year

We can “buy” extra holidays so I’ll be doing to help with time off next year when our treatment starts”
“I have a job that involves constant travel - luckily my line managers have been fantastically supportive, but for how long?”
“I’m lucky in that my manager has been really supportive so appointments have never been a problem, and I’ve been able to talk to him openly about feeling terrible at times.”
 

What could employers do better to support employees going through fertility treatment?

Flexibility, Flexibility, Flexibility

Some practical things I think employers could do to better support employees:

  1. Offer flexi-time to allow people to attend appointments

  2. Offer employer-funded counselling

  3. Offer flexible working arrangements where possible, or working from home on days when you are not emotionally able to go into the office but are capable of working

  4. Offer temporary flexible work arrangements — e.g. going down to .8FTE during the two-week wait, or reducing hours during periods of high anxiety (ie first trimester for those that have had miscarriages)

  5. More flexible development and progression opportunitiesthat take into account timing difficulties.

 
“I think that being more flexible about allowing time off for dealing with trauma is better for them in the long run than forcing you to work when you’re not ready and can’t afford not to - it could mean severely damaging your mental health and needing even more time off.”
 

Happy workforce = productive workforce = everybody wins.

 

For more information please visit Fertility In The Workplace

Fertility Network Fertili-Tea

Fertility Network UK helps 3.5 million people in the UK with fertility challenges. But the charity needs our help so they can continue to do this amazing job. On 9th Feb 2019 the amazing Andreia Trigo from inFertile Life and newly-opened clinic IVF London hosted a Fertili-tea event to raise vital funds and break the silence around infertility.

I joined the fab Jessica Hepburn and Gabby and Emma from Big Fat Negative to chat about support, humour, coping mechanisms and looking after Project You while going through Project Baby, as well as a host of other brilliant speakers.

Tea, cake, meeting new people and raising money for a brilliant cause - not a bad way to spend an afternoon!

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Fertility Fest 2019: Everyone has a story

I’m thrilled to be writer-in-residence for Fertility Fest 2019, which is shaping up to be the biggest and best Fertility Fest yet - recently named by the Evening Standard as one of the best London arts festivals in 2019!

How Fertility Fest changed my life

Here’s my first piece for the Fertility Fest blog, about how the festival has evolved over the last 3 years, and how Fertility Fest changed my life

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: The craziest things I did in the name of infertility

HAVE YOU TRIED…

My fourth article for Metro’s Fertility Diaries series is about infertility madness - the debate over add-ons, and the crazy lengths that many infertility patients go to in pursuit of trying to have a baby.

It also features a rather fetching illustration whereby I’m immortalised in cartoon form alongside some viagra tablets and a tube of fertility lube (bet this article is going to do SEO for my name a world of good!!). I’ve only just managed to work out what the disembodied floating hand is - I think it’s someone with an acupuncture needle (although maybe I do have a massive third hand and have never noticed)

As you’ll know if you’ve ever experienced infertility or pregnancy loss, another infertility bingo classic is ‘have you tried….’ (usually followed by either ‘blatantly obvious suggestion’ or ‘miracle woo healing therapy that their sister’s neighbour tried’)

If a well-meaning-but-clueless friend/colleague starts the ‘have you tried…’ game with me, whilst very well intentioned, I inwardly take a deep breath, as I’m thinking ‘mate, I promise you I WILL win the ‘have you tried?’ game!

This article is a light-hearted look at some of the crazy lengths that I - and a number of other women (it’s not just me who’s lost the plot) - went to in the name of infertility. This is just a highlight of a long list of wacky infertility adventures - safe to say there’s a lot more where those came from!

Including such highlights as:

  • me pretending to be a middle-aged man with erectile dysfunction on the internet

  • my (short) career as an international drug trafficker

  • blessings by a Buddhist monk with a wooden phallus in the mountains of Bhutan 

  • a litany of fertility woo therapies

  • a whole host of other women's mad infertility adventures  

HAVE YOUR SAY

Are you fed up of being asked ‘have you tried’? What’s the craziest thing you’ve tried during your infertility journey?

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.