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.


In Media Res: Representations of Infertility in Comics and Graphic Novels

I’m thrilled to have collaborated with Dr Anna Feigenbaum (Principal Academic in Digital Storytelling) and Alexandra Alberda (PhD researcher in Graphic Medicine) from the Civic Media Hub at Bournemouth University on a project about infertility in Graphic Medicine (the use of comics in medical education and patient care).

In Media Res is an academic blog exploring contemporary approaches to studying media that has theme weeks focusing on particular subjects - we contributed to their Infertility theme week by creating a zine exploring how comics represent the emotional effects of infertility, often nuancing and challenging mainstream media narratives:

Graphic Infertility: Representations of Infertility in Comics and Graphic Novels

A big thank you to participating artists Sarah Glidden, Cara Gormally, Sheila Alexander, Jenell Johnson, and Emily Steinberg for contributing to the zine. Permissions to use images was granted by the artists included; if you would like to use the images please reach out to them via the links provided in the zine.

For more from these artists please see the following works:

Sarah Glidden: Barren

Cara Gormally: We Doubled Down

Sheila Alexander: IF: A Memoir of Infertility

Jenell Johnson: Present/Perfect

Emily Steinberg: Broken Eggs

And thank you to Alex for the wonderful avatar she created of me!

DrawingOut: Drawing Experiences of Infertility

Emotional impact of disease gallery from  DrawingOut

Emotional impact of disease gallery from DrawingOut

As we know, infertility is an ‘invisible’ condition, and it’s really hard to to explain what we’re are going through. As a writer (and someone with a massive gob!) I’m rarely short of a few words to say, but it can often feel impossible to articulate emotions that I’m not sure can even be put into words. Finding an outlet for our emotions when going through infertility is so, so important - to get stuff out of your head in some way, shape or form.

Maybe it's talking to a counsellor.

Maybe it's going to a support group.

Maybe it's posting on social media or in an online community.

Maybe it's writing in a journal.

Maybe it's a mix of all the above.

Or maybe it's drawing.

 
‘Infertility Rift’ from  DrawingOut

‘Infertility Rift’ from DrawingOut

 

Drawing as therapy

A picture is worth a thousand words, and visual expression can communicate thoughts, feelings and ideas in a way like no other.

Art therapy is well understood as a therapeutic tool for addressing painful feelings and difficult experiences without having to talking about them

It can help to get a whirlwind of thoughts and emotions out of your head, and give you a voice without having to find the words

Which is why I wanted to share a fantastic initiative called Drawing Out

 

About DrawingOut

Infertility is an ‘invisible’ condition, and so affected people can struggle to explain what they are going through.www.drawingout.org encourages people to reflect on their experiences of such invisible conditions through a series of simple drawing exercises, and to share their drawings through online galleries. 

People with ‘invisible’ conditions (e.g., infertility, endometriosis, Cystic Fibrosis, ME, depression) may find it especially difficult to explain their experiences to others. A new website, www.drawingout.org, uses simple metaphor-based drawing exercises to help people express and share their thoughts and feelings about their condition. The online galleries showcase the artwork produced by individuals, as well as providing links to information and support through our partner charities. 

The website is the result of collaboration between two academics at Cardiff University: Dr Sofia Gameiro is a psychologist who focuses on understanding and improving the healthcare experiences of infertile patients. Dr Lisa El Refaie’s work has shown that visual metaphor can express people’s illness experiences more creatively and often more accurately than just verbal descriptions. They originally developed DrawingOut as a group workshop tool to help people with invisible diseases overcome language and cultural barriers, and to facilitate the expression of sometimes very emotional, taboo views through drawing.

 
 
‘The drawing makes it fun and makes it easier for everybody to open up’
— DrawingOut participant
 
 

Drawing your own experience of infertility

You can see some of the incredible drawings created at two DrawingOut workshops above, but you don't have to attend a workshop to have a go yourself - there's a step-by-step guide designed to give you the tools to express your experiences in new, creative ways.

It will help you to communicate those aspects of your disease that are invisible to others by drawing about them - and to rediscover the joy of drawing we experienced as children.

Everyone can draw - the only thing you need is some paper, coloured pens or pencils and your imagination!

 

Share your drawings

If you'd like to share your drawings to help others (and encourage them to have a go themselves) please do consider submitting them here so they can be displayed (anonymously) in the online gallery on the DrawingOut website.

And if you'd like to share your drawings with the infertility community but don’t want to do so publicly, you can email them to me and I’ll happily share them (anonymously) on your behalf.

Happy drawing!

#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

Sky News: Why falling birth rates aren't all down to 'career women'

Following on from the latest figures from the Office of National Statistics showing that the birth rate in England & Wales is at an all time low, I was invited on to Sky News to debunk the myth of the selfish career woman who forgot to have children.

At 11 babies born per 1000 people, this is the lowest birth rate since records started in 1938; driven largely by falling fertility rates, which are also lower than all previous years since records began.

Sky don't make rolling news available on catchup, but here's a fuzzy iPhone version of the interview:

 

And for the quick overview, these were the key points I made:

Childless not Childfree

1 in 5 women aged 45 don't have children, but whilst some are childfree by choice, the majority are childless not-by-choice: some due to infertility (like me), but many are childless-by-circumstance - for a multitude of reasons, such as (amongst many others) not meeting the right partner, meeting the right partner but they didn't want children, not being in a financial position to start a family or having caring responsibilities.

It’s not all about women

The most common reason for having IVF is male factor infertility (37% of IVF cycles are due to sperm issues) - and with sperm counts declining at a catastrophic rate, the notion that falling birth rates are all down to women isn't just reductive, but it's pretty misogynistic.

Falling birthrates - good or bad?

Whilst on the one hand lots of environmental organisations are encouraging people to have fewer children in order to save the planet, on the other hand over half the world's countries are below replacement fertility (the fertility rate needed to maintain a society’s population size is 2.1 children per woman) - meaning they're facing a demographic timebomb, where they're aren't enough younger people of working age to pay for an ageing population, which is why so many countries have government campaigns trying to encourage its citizens to have more babies.

The increasing global population is mainly due to people living longer - not only are birth rates declining in many countries, but as developing countries with high birth rates prosper economically and contraception is more widely available, their birth rates will generally trend downwards. So whilst estimates show the global population is on the increase, it's actually projected to nearly stop growing by the end of the century.

Next time someone makes the typical ‘people having IVF are selfish, the world is overpopulated already’ infertility bingo comment, maybe ask them who’s going to pay for their pension?

Reclaiming barren

We also discussed 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.

Fertility education

In a recorded interview which went out in the 7pm bulletin, I spoke about the importance of fertility education to help young people better understand how fertility declines with age, and how it’s crucial that boys understand this as much as girls - because it takes two people to make a baby!

I also highlighted that whilst couples may be emotionally ready to start a family, there are many, many practical barriers that may stand in their way - primarily financial, given high rents, the difficulty of getting on the property ladder, and the lack of affordable childcare. Most of this got cut and didn’t make it into the broadcast, but I think these are really important factors as to why it’s not all about selfish career women!

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)