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

 

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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!”

 

Will it always hurt this much?

I was recently asked by someone who was hurting from a failed attempt ‘Will it always hurt this much?’

My first gut response was to blurt out yes with my next breath, but fortunately I was able to hold onto that thought and think some more about it.

The pain of infertility is a lot like grief I believe.  You grieve for a child you lost of thought/dreamt you had, you grieve for a life you might have had together and you grieve for the ability to create life which seems to be taken away from you.

Grief sucks.  It hurts.  It’s an immense pain.  At the time you feel you will never get over it and it will always hurt that way forever.

Time isn’t a healer but time is brilliant at helping your body, mind and soul adapt to carry that grief.  You learn to live with loss.  You learn to adapt your thoughts, behaviour, habits to cope with the loss of whatever it is you once had but now have to live without.

You learn to live with infertility.  You wake up each morning learning a little more how to deal with everyday life carrying the burden that you are still unable to conceive.

I don’t believe it hurts less.  It might not be as acute as on the day your period starts or the day you miscarry or the day your scan doesn’t show a heartbeat but it will always be there.  You cope better, you get stronger, you get wise to the world around you and adapt to stop it hurting you as it did before.

And so my answer?  The pain of fertility never leaves you, but don’t worry, you get stronger.  This will get easier and being strong will become the norm.

With love to anyone hurting.

Wisdom in one so young

So this morning I sadly received a text from a friend whose second IVF cycle failed.  BFN as they say (well they say Big Fat Negative though admittedly the ‘F’ always meant something else in this house!)  I was so terribly sorry for her and angry at her misfortune and it took me right back to those dark days when I would just want to scream and shout at the lack of control I had over the result.

As I walked into the kitchen shortly afterwards, our 18 month old twins were tormenting Zac, soon to be 7 in just 15 days time and he was looking rather harrassed.  He was trying to complete a game of Fifa on his iPad and the babies were trying to grab it and were screaming in frustration at him.  I laughed at the chaos around me, and poor Zac’s plight, and said: “Zac, when you are all grown up, do you think you would like to have babies?”  I was totally surprised at his answer.

“Well I guess so, if I’m lucky.”  When I asked what he meant he simply said: “Well some people can’t have babies can they?  I might not be lucky enough to have babies.”

So grown up, so wise, so accurate.  I felt an instant pang of guilt.  Had I created a world around my young boy that had taught him one of life’s cruel lessons as such a tender age?  I know we had brought Zac along on our journey to extend the family and I was always careful when explaining to him why he didn’t have a brother or sister at the time, but it had clearly left a mark on him and made a lasting impression that I was ashamed I had not continued to nurture.

As I stewed in my own thoughts and Zac rescued his iPad from his now tantruming little brother he said: “I guess if I say my prayers and am a good boy I might have babies, but don’t worry Mummy, our babies haven’t put me off, they are only annoying sometimes!”

Jason and I laughed at his wisdom and his conclusion that the twins were only temporarily annoying.  Yet today, I’ll say my prayers for my friend, remembering how lucky we were to have ours answered and how extra lucky our babies are to have such a wonderful big brother in Zac.

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?!