Secondary Infertility Matters

“Can I please share your fertility story?”

Secondary Infertility MattersSo much has happened in the last week, I honestly feel exhausted.  After working till the early hours for weeks on end, last Thursday my new website finally went live.  It was supposed to launch today, just a day before National Fertility Week UK, but after Fertility Network UK launched my films on their YouTube channel and Hull IVF Unit released their press release about their new campaign #DareToShare that featured a quote from myself, I had to rush the launch through in case the web address featured.

At the same time as amending PayPal coding and proof reading my pages I was racing too and from the IVF Unit juggling interviews with Viking FM, KCFM and ITV Calendar News!  After weeks of preparation it was all over and done in a flash and I was talking about the new site staring down the camera of the regional news!

But it was all good.  It was all hugely positive and just one of many steps towards raising the profile of Secondary Infertility.  So far, I’ve not personally promoted the website just yet, I’ll be putting it on my Facebook page later tonight, but already, just from promoting the YouTube film the feedback has been fantastic.   As I write, the video has been shared 17 times by my friends and family, how terrific is that?!

One asked: “Is it OK to share?” which was lovely as I’m a stickler for Facebook etiquette and respecting privacy but I was like “hell yeh! share away as much as you can, that’s why I’m doing it!”

The response in their comments has also been fabulous and very rewarding, though it has actually got me thinking ‘why on earth have I taken all this on after the life we’ve put ourselves through the last 5 years?’  I’m still wondering now TBH.  But, what I do know, when I’m not trying to analyse myself, is that it’s the most natural instinct in me right now, behind my family.

I don’t think you ever forget an experience that took you to the brink.  That was Primary then Secondary Infertility for me.

I don’t ever think you forget a comment that stung you.  That was the reply from a publisher who said there wasn’t market for SI books because people didn’t search for them on Amazon for me.

I don’t think you can forget other people who are trapped in horrid position you have been fortunate to have escaped.  They are those still trying for a second child feeling guilty and alone.

Two words people have used a lot over recent days have been brave and inspiring.  They make me very proud but I’ve never felt brave, I certainly don’t mind sharing my story because I know the huge value it has compared to any embarrassment I may have.  Inspiring is an interesting word as it generally means you encourage others to do the same – I hope I do.

If more people who have suffered Secondary Infertility, or even Primary Infertility shared their stories highlighting the pain, the background to the treatment, their coping mechanisms, their successes or how they handle failure, the more people will feel comfortable if they are suffering. We who have been through it must share our experience to ‘normalise’ and ‘de-stigmatise’ fertility treatment.

I hope this feedback continues to grow as promotion of the website, Youtube channel and Facebook page start to grow over forthcoming months.

There was one comment however that could have stopped me in my tracks and say “job done”.

It was from a girl in Pennsylvania who messaged me to say “Thank you for sharing your video. As I sit in my car crying, it was so comforting to know that I’m not alone. Thank you”  I know how much it meant to her because there was many I time I too had been sat alone crying.  I remember the very first time I identified with Secondary Infertility – it was so so utterly refreshing to recognised the situation I was in and know it had a name, I was part of a group of people, and realise it wasn’t just me!

Whilst I wish there was no more ‘girls in Pennsylvania’, I know there are hundreds we need to reach, so again, I say in answer to your question: “Hell Yeh!  You share the ass off my story and let’s do this together!”

 

Progress? I’m not sure

So what’s happening?  Well this all started with writing down my journey to help another couple faced with SI.  Then it became about achieving an ambition to have a book published which then turned into a mission to demonstrate to publishers just how big an audience is out there needing information on this topic.

It is now a crusade.  Having spent 2 years (whilst setting up a new business and running a family home) doing my bit to raise the profile of SI, I’m feel we’ve taken one step forward and two steps back.

So yesterday it was finally confirmed that SI would not feature at the Fertility Show in November because ‘it didn’t fit in’.  I was gutted.  We have recently determined that statistic that 1 in 3 of the 1 in 6 couples struggling with fertility already have a child – that’s 1 in 18 with Secondary Infertility.  It’s great to now know this stat, but it’s frustrating that people still don’t recognise the condition to give it focus.  It’s easy for them to say “Secondary Infertility is important” but still they don’t give it the attention and exposure it deserves and as a consequence the condition remains in the dark, as do sufferers.

My first problem with SI was simply that I didn’t know the name existed.  If we could just shout the name out from the rooftops more sufferers would become engaged.  If we could get them to identify with their own situation they would know where to seek more help.  That would be a huge start.

If we could help treatment providers and support networks to learn how to deal with SI sufferers and their unique situation it would help make SI “fit in” and therefore provide the appropriate information and support in clinics.

My messages are simple

Secondary Infertility is still Infertility

Sufferers are not alone, should not feel guilty and are not greedy

There are unique and specific challenges that need to be addressed for sufferers

More people in the Infertility profession need to recognise the condition

Communication and awareness must be improved

Next month I will be launching a brand new website with information and support specifically for SI sufferers.  A brand new online support and information portal that is UK based.  We may have not made it to the show in 2016 but boy oh boy, 2017 here we come!!…….

You are not alone

It’s National Fertility Awareness Week in the US this week and the Secondary Infertility Facebook pages are full of girls wanting to raise the profile of both Infertility and Secondary Infertility.  It was pleasing (in some ways) to se that the national organisation was using the strapline ‘You are not alone’ as their campaign message.  This was the exact same message I wanted to get across when I realised my situation had a name and knew that there must be others who like me had felt so alone, so isolated in my ill-placed feelings of guilt and greed at wanting a second child, that I began writing my book.

Indeed, after a recent Facebook post a friend of a friend wrote that they gave up reading after realising I already had a child as his ‘wife and I can’t have kids so I have little sympathy’.  It was a feeling and response I completely understood but one that precisely sums up the unfortunate predicament of anyone suffering infertility trying for a second child – there is little understanding from those who have children and never struggled and little sympathy from those who are still trying or unable to conceive a first.

I was never really looking for sympathy, perhaps a little empathy, but mostly a feeling that it was OK to say how shit and sad I felt without criticism or snide remarks.  This gentleman did in fact read on and come back to say he eventually did understand and that we all had pain just in different places.

A lovely response from Infertility Network UK today said that contact with patients showed that the pain of secondary infertility has a huge impact on their lives and that whilst statistics are hard to gather they believe approx 5% of the UK population are affected by Secondary Infertility.

The fact is, Infertility is Infertility.  I had the same desire, needs, cravings, longings, pain, effort in trying, relationship crisis, sadness and despair as anyone wanting a first child.  However, because I had my son I had no escape from that misery.  I couldn’t go off for a weekend with adult couple friends, I couldn’t escape baby groups, I couldn’t get away from childrens’ TV programmes, I had an empty nursery to torment me, I put away baby clothes not knowing whether to keep hold of my favourites and I had a little boy grilling me to answer countless questions about why he didn’t have a brother or sister.

I will be the very first in line to say I am lucky.  I was blessed with my son.  But I will look anyone in the whites of the eyes who dare defy the pain that Secondary Infertility causes and question whether anyone should be vocal about those feelings.  For those who understand no explanation is needed.  For those who don’t understand, no explanation is possible.

The shame of SI is that whilst a study in the Lancet a few years ago suggests that approx 10% of the worldwide population suffers from SI at one time or another, there are just tens of girls on the SI groups in the US and I can’t find any for the UK!  Tens of girls!!?  Girls with SI feel alone, feel shame and feel they cannot talk about it.  In fact I’m pretty sure countless don’t even know the expression such is the stigma of the condition.

They are not alone. You are not alone. So pick up the mantra of the US Fertility Week and if you know a friend or family member that is trying for a second child, lead her towards a friendly group, allow her to talk and help convince her she is not alone, she should not feel guilty and she should never give up hope.  #walktogether

So near and yet so far

In the six hours since the MLTG page went live on the world wide web, it already has 50 likes, 14 shares and I have 4 orders for my book!  How cool is that?  And yet it is the 3 comments made on the page that mean the most.  Sitting for hundreds of hours pouring my heart out into the laptop, often felt like the loneliest place on the planet.  I will never forget the moment I read a paragraph in Zita West’s Guide to IVF (bible) that mentioned existing parents often had a feeling of guilt.  At last somebody understood.  That was me!  I was shocked as I read the words but I was also immensely comforted.  I’ll also remember the shock at learning that our situation actually had a name ‘Secondary Infertility’. At last I felt ‘defined’, part of a group and suddenly not so alone.  To receive feedback today from 3 people who are currently in a similar situation and have thanked me for sharing my story is one of the strangest feelings I have ever felt.  In the words of one: “I honestly can’t relate to that enough.  You have captured how I’m sure a million women feel.  At a daunting yet exciting time this had given me so much positivity for the future.”  I have always dreamed of getting this book published but tonight, this means more to me than any Amazon listing.  I know how she feels, she now feels understood.  She doesn’t feel so alone and I hope she can start to shake off a little of the guilt she has been carrying round.  Yet I feel sad that despite launching on the world wide web, this friend lives just 10 minutes away.  We live so near, yet when you are struggling alone, we live so far away.  Let’s talk more.  Let’s share more.  Let’s drop the shame. x

Bravely does it…

So here I am finally getting ready to make my site go live and this feels like the scariest thing I have done in my life!

This book has taken three years to write and it is strange to think that I started to write before I even knew the term ‘secondary infertility’ existed. In fact, I started whilst going through our first cycle so that was even before I had any reason to think I would need a term to describe our situation!

I am pretty sure that had I known about our journey and the four attempts before I started the IVF treatment, I’m not sure I would have ever taken the first step. It was a daunting experience but one I embarked on fully expecting to get pregnant first time. I hadn’t anticipated the darker side of failed attempts. Looking back, whilst this was naive, it was also my saviour, for it made me get on with the treatment and have a go. It was a long, painful journey that would not have been so easy to start had I known all that I was in for over the next 14 months.

And yet, sat here now, about to launch my blog and launch my Facebook page, this feels like the scariest journey I have ever made in my life.

Sharing my thoughts, our most intimate moments, not to mention my possible grammatical errors, all seems pretty daunting.

And then I remember that couple on the sofa that have been in my thoughts whilst writing every chapter. Somebody, somewhere, feels guilty for wanting another child and ashamed that they feel so desperate for a child when they know they are blessed to already have one, or more.

They are my saviour right now. For if sharing our story can convince just one couple that it’s alright to feel the want for more children, that you’re not greedy and you should not feel guilty, then that is all the motivation I need to press ‘go live’. It doesn’t feel so scary afterall.