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

 

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!!…….

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.

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.

Let’s Remember to Talk x

From Remembrance Day and National Duvet Day to Stoptober and Movember, there’s always a day or week set aside to remember, celebrate or raise awareness of one thing or another.  It is really pleasing to see so many poppies popping up at the moment, in fact Zac was really proud to buy his and pin it on his jumper in the playground this morning.  I’m a great supporter of the Poppy Appeal and all it represents.  Yet there has been another significant event for me last week, Fertility Awareness Week.  More than 3.5 million people in the UK alone experience fertility problems when trying for children – that’s one in six couples.  When you stop to think, that’s not all couples, that’s one in six of those trying for children, so that’s a heck of a lot.  More than I thought in fact.

Launching my book’s website the weekend of the start of Fertility Awareness Week, to be honest, wasn’t a complete coincidence.  Whilst it wasn’t something I felt ready to ride on the back of, as I am still a little way off publishing, in my own private way it was important for me to help with one of the main aims, and that was to get more people talking about fertility issues.

This last week it has been terrific to see so many interviews and features about options available for people, details about the impact infertility can have on people’s lives and honest interviews with well known faces who are brave enough to talk about their journey, to millions of readers or viewers.

“I struggled to conceive my first child and I needed fertility drugs.  I had a much harder struggle to conceive a second child and had four rounds of IVF.  I was very fortunate and we now have three gorgeous, healthy children as our fourth round of IVF produced twins.  I couldn’t do it alone.  I needed help.  I had IVF.”

There, I’ve said it.  I can say it now.  I find myself saying it often these as I know it brings comfort to many people who are in the situation we were in and I know the comfort I found from speaking to others at that time.  Yet there was a time where I felt shame, guilt, failure and a deep, dark feeling of bereavement at times for something I felt I’d lost, my capability as a woman.  In those days I could never have said those words.

Like a crutch for a broken leg, an anti-inflammatory for a bruised muscle or anti-biotic for an dental abscess – sometimes other parts of the body need some help too and there should simply be no shame in talking about it.  On a par with depression, infertility should not be a taboo and we should encourage a society that embraces those that sometimes need our support as their crutch through a difficult time. That crutch can sometimes be just talking without judgement.

So well done to all those who encouraged people to talk about their fertility situations last week and long may it continue beyond 2014’s Fertility Awareness week!  Let’s talk.