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!”

 

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.

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.

New Chapter Release

https://morelovetogivebyhelendavies.com/sample-chapters/chapter-15-staring-at-the-face-of-frightening-statistics/

So those who know me well, probably won’t be surprised to learn that I’ve started writing another book, which is again about Secondary Infertility, but is more of a guide and practical support for those suffering and for those around someone suffering.  It will hopefully be an easy to digest ‘friend’ to anyone wanting to understand more about their situation and on realising it is a ‘condition’, the content will also hopefully make them feel empowered and a little more at peace.

In researching this new book, I have been all over the blogs and websites recently and what has struck me is that whilst my babies are now 2, nothing has changed.  There are new women every day, bravely joining blogs and forums asking the same questions, feeling the same fear and wanting to know more information.  I never really thought the problem had or would go away, but neither had I given it much thought since I had stopped visiting the sites, so this came as somewhat of a surprise.  And it saddened me.

I am currently a ‘text buddy’ to four girls, all going through fertility difficulties, all with different stories and situations, but all share the same pain.  And all have the same thirst for knowledge, hunger for understanding and desperate need of support.  The feeling of helplessness I often feel does quite bother me and I have an appreciation of my close friends and family who clearly would have had the same feelings in supporting me on my journey.

And so, the only thing I can do is to show understanding and so I thought I’d share another chapter from More Love To Give – An IVF Memoir, and enlighten them, and anyone else in a similar boat, that those feelings they have are normal and it’s OK to feel that way.  This chapter describes the first group meeting we attended before any treatment started and gives an insight into how the emotions make your brain run riot in your head and your heart bang twice as loud as I’m sure it should!

My putting the proverbial pen to paper a second time isn’t that I’ve given up on this first book.  Far from it.  I’m bloody determined to get it published but have been a little sidetracked in recent months.  The second book is a ‘buddy’ for the first, a partner, a support to help it get to it’s final destination.  And sometimes, that’s all any of us can be.

I hope you enjoy x

 

 

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.

Forgive yourself this week

There’s literally no escaping it.  The news is everywhere.  There are follow up stories, features, in-depth analysis, write ups, opinions, photographs…….we have a Princess!  Princess Charlotte Elizabeth Diana arrived this week and the news was greeted with great joy around the world.  Well almost.

As a royalist all my life, I was excited to find out whether it was a boy or a girl and delighted to see William tenderly kiss the head of the baby Prince George, now newly promoted to the role of big brother.  He’s been hidden from cameras but has clearly grown up, walking now, pointing and becoming a proper little boy yet still Daddy’s baby boy.  No time has seemingly passed for Kate or Will to start to notice how quickly he is growing, how the age gap is widening or wondering what sort of big brother he would be.

This fact won’t have escaped the thousands of families out there who are doing just that with their own children.  Wondering if they will ever be able to give them a sibling, counting the passing months with the arrival of each period as the gap between any would be brother or sister gets bigger and bigger.  Facebook groups for Secondary Infertility were literally littered with women hurting from this news.

It’s not that they wish Kate ill for having a baby so quickly after George (or for looking so amazing just 10 hours after having a baby lol!) and it’s definitely not that they wish Kate had had to struggle in the way they are.

It’s just wish they were in her shoes (nude Jimmy Choos btw) and were finally celebrating a sibling.

It’s a gut wrenching anxiety that they cannot control that makes them feel so exasperated that they have no control over the outcome of their situation.  They simply can’t give a sibling to their child at the moment.  When others seem to pop them out all around them, the truth that they are seemingly unable to do what is so natural is torture.

It’s the fact that news of a royal sibling will undoubtedly prompt friends and relatives to start asking when they will be knocking out another.

It’s the way that whichever way they turn they simply cannot escape the news that there is a brother or sister for George.  Nappy ads on TV, bubble bath ads on social media, newspapers, magazines everyone talking about it…even the flippin Royal Navy did their own photo on Facebook to celebrate.  There’s simply no escape.

It’s the fact that thoughts and feelings are regularly entering their heads and hearts and they hate themselves for it.  Dark thoughts, feelings of jealousy, anger, deep envy and frustration.  They aren’t nasty people, don’t normally have such dark thoughts but such is the pain they can’t stop them and they hate that fact.

It’s the tears that have come, uncontrollably, without warning and with no specific trigger. They just fall, silent warm tears, mourning a child that doesn’t exist yet, prompted by a child someone else has been able to bring into the world.  It’s the release valve that they have, letting out some of the frustration, in big, wet tears that spill out when they least expect.

And above all, when they are trying their best to get their head down, get on with life, act normal and be positive, this is just another huge reminder of the battle they face.  The fight they feel like they are losing and how they feel they are letting their child down.  The feelings never leave them but sometimes life is bearable and they can get on with it, momentarily forget the pain and move on.  This week, they haven’t been able to.

So if you are currently feeling lost in a world that is moving on with new babies, whilst you struggle with Secondary Infertility take heart knowing that someone understands how you  feel, cut yourself some slack and forgive yourself for feeling the way you do this week and more than anything, realise that you are not alone.  #bestrong

At what cost a child?

http://www.dailymail.co.uk/femail/article-2926471/Woman-appeals-donations-strangers-afford-IVF-refused-treatment-NHS.html

This story is in the paper today about a woman whose only hope of a child is through IVF as her partner had testicular cancer, but because he has also had a child in another relationship before the cancer, the NHS refuses to fund their fertility treatment.

Her mother describes Eva: ‘Eva is a shadow of her former self. As Eva’s parent I have watched how the desire for a child has affected every part of who she is.

‘Eva has lost her confidence and self-esteem… she is depressed, angry, and always emotionally fragile.’

Funding debates are complicated and views are subjective and having had to pay for four rounds myself i am obviously fairly one sided in my views. What frustrates me mostly in the ‘should fertility treatment be funded?’ debate is that the fertility organs aren’t viewed the same as any other organs that aren’t functioning properly. It takes two to tango, two people and two sets of fertility organs to create a new life – if one of those isn’t working properly why are these not eligible for funded treatment? Unjust? I think so. Needs addressing? Definitely. I consider myself lucky to have afforded 4 rounds but there would have shortly come a time where I could not have afforded another round, if that time had come after three rounds I would not have my babies today. Unbearable thought.
That Eva has had to resort to the Gofundme site is testament to the pain longing for a child creates and her sheer determination to be a mummy. I hope she is successful. But then her real battle starts and I wish her success with her treatment too.
I can’t ever remember seeing a morbidly obese person launching a Gofundme site for a stomach stapling!! #unjust

Between a rock and a hard place is a very hard place to be.

Having just been rejected by a publisher, following two rejections from agents last month, I am, as you can imagine, feeling a little flat.  Yet not because my book has been rejected, believe it or not (I mean JK Rowling apparently had her Harry Potter manuscript rejected 20 times), but because of the reasons being given.

They feel “‘More Love To Give’ is for a very niche audience”; no shit Sherlock!  This subject will of course only appeal to a very small audience, though on the positive side, thankfully there are fewer people who will want to read about struggling for a second baby than there are interested in wizards!  I can live with a ‘niche, specialist market’ reason.  Yet the next two leave me furious and frustrated: “There are very few searches on Amazon for Secondary Infertility” and “another memoir book about Secondary Infertility has only sold 29 copies in 10 years” 

I could have told them there will be very few searches for Secondary Infertility on Amazon given I went through four rounds of IVF and wrote a bloody book about it before I realised my situation had a title!  I Googled and searched for ‘IVF’, ‘infertility’ and ‘trying for a second baby’.  I never searched for Secondary Infertility because it is an area that is so over-looked and has such a stigma attached to it that nobody spoke to me about it, so I never knew where to find specific help – THAT’S WHY I’VE WRITTEN A BOOK TO HELP OTHERS IN THE SAME WILDERNESS!

And as for having my future mapped out based on somebody else’s dismal attempt at writing and selling their poor excuse for a book, well that is just infuriating!  29 copies? Somebody wasn’t doing their job right were they to only sell 29 for goodness sake!  Or could it be, that just too little promotion was done to reach those people who would have loved to read the book but didn’t know where to look or how to search for it on Amazon??!!  Believe me, I know the market is a helluva lot bigger than 29!

Mr Chicken meet Mr Egg.  Mr Head meet Mr Brickwall.  

To date, I have 34 copies of my book reserved and I even took a reservation from the checkout girl at Tesco last week, who was cooing over my twins and talking about how she has been desperate for another child for years but her husband is happy with their son and refuses to have another. “Oh really?…”, said I.  Another copy reserved. Bish bosh.  And I haven’t even started yet!

I fully expected to get lots of rejections and I’m slightly sad but cool that I’m going through the process.  I was so close with this publisher this time.  One step on from an agent and they were really tempted, but it was just the stats and facts about the potential market and previous book’s performance that held us back.

It may be a small minority of people, let’s face it we won’t be knocking good ‘ol Lynda Bellingham off the bestsellers’ list, but perhaps that makes me more determined to get this topic talked about.  Those few people with so much more love to give have too few places to find support.  They deserve to have someone take a punt on them, and my book, and for the profile of ‘Secondary Infertility’ to be raised.

You can’t get to your destination if you don’t know where to look for a signpost.

29 copies?!  Hmph!