Talking about SI is a balancing act

helen davies, more love to give, secondary infertility matters

Helen Davies, More Love To Give launch at The Fertility Show.

So the last few months have been a blur juggling the family, running my business and doing the one thing that has taken over everything, launching ‘More Love To Give’.

Whilst the actual launch itself was a little nerve wracking initially, it was very quickly hugely rewarding and wonderful.  To have people, especially those you know well, suddenly read your inner most thoughts and feelings in a manuscript you’ve been working on for the last four years, is actually quite terrifying!  Once I knew someone had bought it, I was giddy yet skittish wondering where they were up to, what had they read, what did they think.  My husband quickly calmed me by reminding me that it doesn’t matter what people think, I have one goal to comfort SI sufferers and the rest is just my own opinion and experience.  I’m not going for a creative writing prize so I shouldn’t worry what people think as long as the books get into the hands of those that need that reassurance that they are not alone “and they’ll get that simply by holding it without turning a page!” he said.

I needn’t have worried anyway as the feedback has been overwhelmingly positive.  I have literally been bowled over by the response and in particular that so many who have bought it “couldn’t put it down!”.  In particular, one reader who is a member of the closed Facebook group, bought a copy on the launch day Tuesday, received it on Thursday and wrote the most gorgeous email on the Saturday night thanking me.  I was out for a Mother’s Day meal with my Mum, Auntie and cousin and had been at the Fertility Show all day, so it was a lovely time to receive such lovely feedback.

Here is a little bit of her message: “I just felt the need to send a message to say thank you. So much of the book rang true to me and the way you explained your feelings was exactly how I have been feeling. Whilst reading the book I have laughed (a little, and will never be able to buy a glitter bath bomb!!) and cried (a lot!!) but most of all I have finally felt like there is someone out there who understands exactly how I feel and who has put it into words in a way that I am struggling to do.”

When I forwarded the email to Jason he replied: “OMG I have tears in my eyes, wow this alone is why you wrote the book, if you never sell another copy that’s fine with me 😘  and that should be fine with you, you have helped another with our story, big love to you Helen Davies xxxx”

At that moment, it had all been worth it. She was just one, but she was all I ever hoped to make a difference to.  I didn’t know her, never met her but her response and the impact reading my story had had, made it all worthwhile.

Yet with every positive response, as well as giving a ‘job done’ feeling, it only spurs me on more.  How many more are there out there that need that reassurance, understanding and support.  I’ve reached one, let’s find another……and so I’m sure it will go on.

However, it’s not all been plain sailing.  I’ve had emails and comments online criticising me for speaking out on an subject that might upset some who are suffering with Primary Infertility.  They have said I should now shut up because I have three children – what do I know about struggling for a child?  They have said I’m disrespectful to anyone who still wants their first child.

I’ve drafted a blog reply but I’ll never post it.  What it all basically says is that you haven’t said anything online or in email that hasn’t been said at some time to my face.  You have completely misunderstood and clearly not read anything I have written.  In fact I do understand, more than most so much so, all I have ever written has purposefully been considerate of anyone struggling to conceive a first baby.  So the nasty notes haven’t upset me at all, in fact they have only served to demonstrate what SI sufferers have to put up with and why they are reluctant to speak up about their pain for fear of upsetting anyone still trying for their first.

However, I was knocked a little off course by a close friend who broke down when I showed her my book.  In short, life’s path hasn’t resulted in her having a family of her own.  In all the months I have been excitedly promoting the forthcoming book launch, I had no idea that my talking about Secondary Infertility was grinding her down, bringing to the surface all her hidden emotions about not ever having her own baby.

I know that the subject of Secondary Infertility can be very upsetting for someone who has yet to have a child, and that it is very difficult for them to understand the concept that fertility is fertility.  We are all on our own unique journeys and the circumstance may be different but the pain can be just as intense.

Yet in the cold light of day, holding my darling friend in my arms and she let out tears of grief, frustration and anger that had been pent up for way too long, I regretted ever speaking out, when indeed, I am blessed with three amazing children.  Never, ever, have I wanted to upset anyone.  I wouldn’t risk upsetting one person I loved, even to help the hundreds that I have, that I don’t know.  I felt dreadful.

She has reassured me that she is proud of me but that she can’t bear to read my story of Secondary Infertility when she feels so upset about her never having her one baby.  I get that.  I understand that completely.

So, whilst we both come to terms with our lives, journeys and difficulties this past week since we spoke, it has certainly made me think about the fine balance of the feel good factor in doing good and the harm doing good can do to those you feel so much for.

It is such a bloody shame that in talking about the pain Secondary Infertility causes, you risk inflicting pain on another group with another struggle.  In fact it’s shitty, it really is shitty.  It feels horrid, really horrid.

And yet, my conclusion after a week of soul searching is that, sometimes, if you choose your words and timing carefully, good should prevail and perhaps talking about and lifting the lid on Primary Infertility grief in the process can be just a cathartic.  Infertility sucks and only if our society talks about it , will we ever all feel understood, more supported and a lot less on our own.  Shying away from difficult subjects won’t help anyone.

Continuing to encouraging talking will never ever take away the pain of not having a baby you want, no matter what your situation is, but it might help relieve the tension and frustration which can only be a healthy thing for us all. I just hope I can find that right balance in the future.

#secondaryinfertilitymatters

 

Almost here……

So nearly four years on and my book is finally here.  Not launched yet, but we are now just a few days away.  Just a few tweaks to the distribution and then we’re off!

Today I went to the publishers to collect some copies ready for The Fertility Show and as Zac was off school poorly today, I had to take him along with me for the drive.  Somehow, it was meant to be that he should have a high temperature and be off school today.  Afterall, if he hadn’t been such a wonderful, beautiful boy, that meant the world to us, we would never have been on this crazy journey in the first place.  It felt like a nice full circle closing, (though of course grumpy pants didn’t think so and is actually all rather bored of ‘mummy’s flippin book’ at the moment!)

I’ve seen a draft version in print before and that was a thrilling moment and it was exciting to tear open a box with Jason and give him the first official copy – note to self, he’s not paid me yet!.  But perhaps the real ‘WOW’ moment for me today was seeing a stack of the books in the warehouse and the first palette all boxed up.  This was more than ‘my book’ it was a bloody great big pile of books all ready to be dispatched to anyone who wants to read it, all over the world.  My stomach lurched and it really was a moment to remember!  “Bloody Hell!”

Getting a book published had been on my Bucket List for a long long time.  It’s almost unbelievable and too much to take in to realise it can now be crossed off!  But this last couple of years has turned into much, much more than just trying to tick off an entry on my Bucket List.  It’s become less about my story and more about the story of Secondary Infertility.  Two words that I had never even heard off when I first added ‘book published’ on my Bucket List.  Two words I’d never heard off when I started, and ended, my fertility treatment.  Two little but significant words that changed my life forever.

Of course I’m excited about getting the book finally published, holding it, seeing what it actually looks like after all these years in the planning.  With regards people reading it however, I’m really quite nervous about looking into the whites of people’s eyes that I know, after they have read it, knowing they will have seen into the depths of my heart and soul  – it’s quite a frightening thought in someways.  The obvious excitement is also tinged with a little anxiety!

Yet truly, the most thrilling prospect today is sitting back at my desk and seeing all the feedback on Twitter and Facebook from couples (mostly girls) who want to read the story and who I know will feel comfort and understanding.  They are the ones it was written for.  They are the ones I imagined each night as I tapped away.  I wrote 102,000 words detailing our story but really I just wanted to say “you are not alone, you should not feel guilty, it’s OK to want another baby” over and over and over again – perhaps 102,000 times!  Yet that book wouldn’t have sold for sure, and writing about our most intimate moments and thoughts, seemed to be potentially a more interesting read.  We’ll certainly find out over the next few months!…….

So my excitement tonight is a little premature.  This is a personal achievement for me for sure but it’s not really crossing the finish line until the book is in the hands of someone who it was written for, who needs it, who will benefit from it.  When they put it down and sigh saying “I finally feel understood” and toast that freedom with a large G&T then I will really be able to WHOOP WHOOP!

To remind myself of the very last paragraph in the book:

And finally thank you to the publisher who turned me down and said “There isn’t a market for this book.” You lit a touch paper in me I never knew existed and prompted me to prove you wrong. There is unfortunately a huge market of couples across the world that will sadly appreciate, buy and benefit from this book and it is my intention to reach them. They may not know it yet, they may be unaware of the name of their condition, but without your rejection it would never have been my mission to tell them.

What I really wanted to finish that paragraph with was FUCK YOU!!  #fingersalute

 

 

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!!…….

Hello my old friend – Fertility Road Magazine

The waiting room at Hull IVF Clinic is a very strange place.  For some reason they have all the chairs in a square, facing each other, which is strange given most clients don’t want to look at anyone else or be seen by anyone else.  They then have what I always thought was the most bizarre collection of fake Irises in the centre, which I guess could perhaps be strategically placed to disguise clients?  And they then have a couple of coffee tables with magazines, which is where I first came across Fertility Road magazine.

Now don’t get me wrong, it’s a lovely waiting room, very calming, with lovely personnel attending to you.  There is a water machine, tea and coffee station and lots of information on the walls to read whilst you are waiting.  There is also a board full of photos of babies obviously successfully born with the assistance of the wonderful team there.

And yet, as I used to sit there, head down avoiding eye contact, I couldn’t help but look at the next person through the door, check out the next couple leaving the consultants’ rooms or the next lady calling at reception to collect her drugs.  It was like a flipping car crash that even though you didn’t want to look you just couldn’t help rubber necking!!

And so, Fertility Road magazine became my life saver.  I’d stare at the pages of the latest edition trying to focus on anything but anyone else around me!  It was also jam packed of information targeted at people like us, unlike any other publication around.  It was so refreshing!

As my mission to raise the profile of Secondary Infertility got new impetus this year, I was so delighted when the Editor agreed to publish a short article I wrote about my ambitions to break taboos and encourage people to talk about all kinds of infertility.

If only I could have told that broken girl in the waiting room the journey she would go on and how one day she might end up in that magazine she was holding.

Then again, she would never have believed me!

That look on his face.

As much as sitting on the loo staring at the dark streak of blood on the paper in my hands gave me a kick in the stomach, that was nothing compared to the pain of having to tell my husband.  It wasn’t bad enough that I should have the earth shattering discovery that I was bleeding and my dream of being a mum for the second time was over for another cycle, I then had to find the courage and strength to impart the tragic news to the person I loved the most, my husband.

Infertility is often all about the woman, for obvious (unfair if you ask me and God IS a man but anyway) reasons.

I could be broken, physically, mentally and emotionally destroyed yet I would have to muster that certain something that would not only enable me to deliver the news, but also be there to comfort and support him when his dream of becoming a father was snatched away, again.

I was talking to another girl recently about ‘that look on his face’.  That little boy lost look that cannot disguise the immense, acute pain coupled with the longing yet confused look as to what to do next.  Should I hug her?  Will she hug me?  Can I change this?  Can I rewind time?  Can it be true?  It is alright to cry?  Do I really have to look at that paper FFS?

There is no disputing that men are often overlooked throughout the treatment and it’s pleasing that mens’ fertility issues are being talked about more and more.  Yet still, no matter how much attention is paid to perhaps Men-related causes of infertility, whatever the cause, there will always be that look between and woman and her partner when she has to deliver the news.  It’s unavoidable, and I guess in some relationships, that look could be on a female partner where the other is trying to get pregnant.

I will never forget that look.  I’ll never forget the fear and fury and having to tell someone that news knowing how devastated they would be.  When I needed support the most I had to find strength to comfort someone else.  Yet it’s the way it was, will be and can only be.

In their shoes – and I don’t like it!

Each time my treatment failed or my period came, I became hardened to that pain and became deaf to my loved ones soothing words.

Their sympathetic repetitive phrases used to drive me mad and the helpless look on their faces as they struggled to find anything to say to help me was almost as painful as the despair itself.

I did feel sorry for them.  I did long for them not to feel any pain and often, once the realisation that we had been unsuccessful yet again had sunk in, I’d start to dread telling friends and family, knowing that they too would be hurt once more.

Recently, I was supporting someone I have known for years through her fertility treatment. This time, her fourth cycle, she seemed to be passing every hurdle brilliantly and she got further than she had ever got before.  And then she shared her tragic news.  It was not to be.

Whilst I have supported a number of girls through negative tests, miscarriages and failed cycles, this one hit me harder than any before.  I was convinced it was their time.  I had no words.  I literally did not know what to say to her and for the very first time I wanted to get on the phone to my Mum, brother, sister in law, big sister, friends and wider family and say how utterly sorry I was for everything I put them through.  For all the times I growled as they tried to find something to say.  For all the grunts when they said they were sorry for us.  For all the times I left the silence between us as they struggled to make me feel a little bit better.

It was horrid.  I felt useless.  I realised just how hard it had been for those around us.

In the end, after expressing my sorrow of course, I used the words with her that I found to be the only words that helped me. “It’s shit”

I found in saying these words to friends and family, it let them off the hook in trying to find clever words to fix the situation.  There are no words, there is no fix, the situation is just shit.  I knew it, they knew it and actually, bluntly acknowledging the fact always made me and them feel better.

They say swearing demonstrates a poor vocabulary, but when all else fails – who gives a shit?!