fertility network uk

#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]

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.

Image by Maria Andrew

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…

#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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