Invisible

2015-10-06

Hello lovely people, I hope everyone is well.

I’ve not blogged in a while because on the whole I’ve been feeling quite down for some time now and I don’t like to spread my misery too much.

Putting on a happy face everyday would take its toll on anyone when inside you’re just feeling very sad and crushed.

Madebysteffieb is still growing, it’s been around nine months since we launched the website and we are over the half way mark and creeping towards our first go at IVF. We are closer then we’ve ever been!

I’m doing this everyday, whether it’s making Cuties, promoting myself on social media, sharing, creating new ideas for Dotty stories, new photos, etc…

This is currently my life and a big part of me is in love with what I do.  I adore Dotty.

More people than I ever thought are signed up to my newsletter / blog.  It always cheers me up to see someone new sign up, a new friend, perhaps a step closer to my goal.

I have met some pretty remarkable people along my journey so far, from all walks of life and a few bad ones too. I’ve been promised mountains that never materialised, I’ve been told that donating to me isn’t worth it and I’ve made more Cuties for people who didn’t come back for them than I care to remember.

Still, overall this experience has so far been a positive one, as tough as it may be.

Despite my initial fears, I put my story out there and most people who have shown an interest have read me and are still by my side today.  I am so grateful for the support I have, it’s impossible for me to thank everyone even though I try and of course this post is not directed at you.  This post is about life in general when you live with infertility.  These are my views and I am not speaking on behalf of anyone else.

I don’t love what I am doing this for.

I am here supposed to be talking about infertility and mental-health, which are two issues I struggle with but too often I’m too scared to speak out in case I upset someone or I say the wrong thing.

When I stop and think about my reality I get very distressed. It often turns into some kind of panic attack.  I become an inconsolable mess, I cry like a baby, because I want someone else to make it better, just for a moment.

I get angry and frustrated, I feel like there is a huge hole inside me, I feel incomplete, I feel like I’m not a woman, I feel like I am no one and I don’t matter.

It’s easy for people who have children or don’t want them to say that this shouldn’t “define” me but the reality is that of course it does. If it didn’t define me right now, I wouldn’t be here doing what I do.

I have come across so many women in my situation and not one of them has either given up trying or got over the loss they have felt because of their infertility.

The insurmountable grief of having to come to terms with the possibilities that this may never happen for me is crippling. Something is missing.  In my case, pending reaching having the opportunity to try and living with the not knowing everyday feels ever more damaging.

The world we live in does not take people like me into account; everything is geared towards families and children.  My illness and my pain are invisible.

Everywhere you go, everything you watch and hear, it’s all about babies! That’s how it feels to me.

Most of my friends have children and most of them don’t really talk to me about this. They ignore me on Facebook, I don’t even get a like when Dotty says good morning. What’s that about? Where is the sisterhood now I really need it?! I’m here, nothing has changed, I’m still not giving up and I’m definitely not okay…

Amongst every charity that is on the forefront of our TV screens or our social pages, there isn’t one prominent one that campaigns for people with Fertility issues.

I’ve seen a group or two but these mainly attract couples like us and whilst we talk amongst ourselves about what it’s like to look at other people’s children and feel like you’re being stabbed in the heart, it doesn’t get us any closer to our goals. I personally don’t find that this helps me.

I have asked for help and I have reached out to just about everyone available to me in terms of medical and emotional support /advice.  I’ve given up asking, we cope how we cope, often on our own.   All I’ve ever been met with is ignorance and a complete lack of interest.

I mostly rely on my GP (whichever one I see that week) to support me when I feel like I’m sinking and I don’t understand why I can’t just do the most natural thing in the world, but I just get offered pills. I don’t want them!

I think that infertility should be referred to as a TABOO subject, because overall we just don’t talk about it much.

Now and then the television will show a new advance in technology or mention someone famous who has announced they have fertility issues but often it goes no further.

I’ve sent countless messages to celebrities and TV personalities who have had issues with infertility or not, to try to get their support. Family people, new mothers, anyone. Little me isn’t going to change the world, but perhaps someone with a voice could help.

How about we campaign for clinics to stop making it so unaffordable for people to have IVF and receive more support?Stop people from going abroad and having to deal with the extra stress when it’s already such a painful and delicate process.  How is it that you can get a few days in Prague, flights and IVF for half the price you get IVF here?

Why are private clinics in England making it such a lucrative, inclusive “luxury” for people to have IVF? What is the point in research and progress if it’s not accessible? Is the government secretly trying to make a super race and ignore the “normal” people?

My feelings probably seems so futile to some people. What is she moaning about? She’s got her health, her partner, her family, a roof, food on the table.  I know I do and I am so grateful for all these things, but it doesn’t change my circumstances.

These are some comments I’ve had before.

Kids are a pain in the a**.

You’ll be ok, get over it.

Why don’t you just adopt, lots of kids need homes… (You adopt them then!)

I learnt this week that 1 in 6 couple is affected with fertility issues, doesn’t seem that futile to me.

I’ve read so many posts on in internet from women going though infertility and IVF, it’s scary. I’m not really involved in any discussions.  I keep it all for here as I find it too difficult to take part in the chats and since I’m not having IVF right now, I don’t really fit into the conversations.

These women talk about their struggles, their fears, their hormones levels and their scans.  They post pictures of huge needles and bruised bodies from the injections they have to give themselves daily.  They hang on to every word that sounds like they could be a little bit pregnant, they ask all sorts of questions as if they’ve not been given all the information. It’s panic central and a daily turmoil that I just can’t keep looking at.

A “viable embryo” is often the closest some of us will ever come to motherhood.  How sad is that?

The girls talk about their miracles or their disappointments, where will they get the money for their fifth cycle of IVF? And it starts all over again.

I hope for a miracle every month and then my heart breaks again when it doesn’t happen.

To think that some people take motherhood for granted!

We know that children can be a nightmare, we know it’s hard work, but a Facebook status to say that you’re glad that your children are back at school is a stab in the heart for us. So the comments I get goes for these people too, what are they moaning about?

I don’t find it comforting that we all seem to suffer amongst ourselves or in silence. I’ve spoken to people who haven’t told their family they can’t have children, to spare them the hurt. It sounds crucifying and I’m not sure I’d still be here if I had to go through it on my own.

Everyday I wish madebysteffieb wasn’t about my infertility and I could keep this side of things private.

That’s why I don’t write often, but I’ve started something now and I don’t like to just give up on things, so I just have to get over myself and carry on, one day at a time, hour by the hour Shaun says.

It’s very hard to have to put your life in the hands of other people for something that means the world to you.

Anyone who is fundraising for a personal cause is automatically put into a vulnerable position. By opening your heart, you open yourself to anything, that’s how it is on the internet, anything goes.

And it doesn’t matter how many photos of Dotty I post or how many Cuties I make, if people don’t think that I am worthy then that’s that.

I am at the mercy of the universe, asking the moon for a miracle.

I understand that not everyone will empathise or even be interested, but given that most people are parents it does frustrate me.  According to most parents posting on Facebook (again), their children are their world.  So why is it so hard for a lot of them to get some idea of how painful their world would be if they hadn’t had these children or if they were taken away?

I’m not talking about childcare issues here, I’m talking about moaning for moaning, asking for sympathy because it’s hard work to look after children.  YOU are lucky to have them!

We all think that what we have is more important than what someone else has and of course it is, it’s personal, it’s your thing.

It just feels to me like infertility is all the way down the bottom of the priority list when it comes down to all the worthy causes around us.

Being unable to have children makes me feel like I did something wrong and that I just wasn’t good enough to be a mum. Whether that’s true or not is not the point, it’s happening everywhere and lots of us feel that way.

Mothers stick together for their children (so they should) but they ignore us, we’re not part of the gangs who post about how they love their children, their daughters, their sons, pretty posters with flowers on.

Other than my “saving up for IVF” tagline I don’t really tend to go on that much about it, it’s mainly Dotty being loving who’s out there so I don’t think I’m offensive.  To some people of course I’m just competition, another crafty business, I’m really not.

Somedays I wish there was something else wrong with me, something you can see and post photos of online then maybe I would fit in better and get the help I need.

I wish I had a voice, someone famous standing up for everyone who suffers with this.

This whole world seems to be about sharing.  We share watch their programs, their films, we buy their music, we read their books, we make their dishes, how about someone speaks up for us as well please? Or is it just all about you when you’re famous? When a million people follow you and hang on your every word all you can tell them is what you had for breakfast then what’s the point?

A few months ago when I was starting out I sent out a package to a TV show.  It was on in the afternoon and they were asking for people to send in their crafts.  I sent in two Cuties, I also added a letter about what I was starting out.  I never heard back, not even to say that my post had been received.

Yesterday I opened my computer and the first post I saw on Facebook was about one of the hosts of that TV show who was recently diagnosed with infertility.  It IS everywhere and it DOES happen to the best of us so why can’t we matter too?

I know that it’s a personal choice and a right for people to be outspoken about their issues of course but it would be so good if someone did something.  I don’t feel that I have a choice if I want to reach my goal, Shaun and I can’t do it on our own and I have always been honest about it.

It’s not enough for celebrities to declare that they struggle with infertility and make the front pages, flash the cash at IVF clinics and then disappear. Some of us can’t do that.

There are great representatives for mental health issues out there but if you’re depressed mostly because you are unable to have children it doesn’t seem to fit in that box. Depression is depression.  I don’t feel represented at all.

It wasn’t a choice I made to not have children, I had no say in the matter, my negligent GP is happily retired enjoying his family life and our terrible hospital is still hurting patients.

I have been lucky to find some amazing people over the last nine months and it is thanks to you, to Shaun and to my family that I am still standing and still fighting for my chance.

You are my support network and you are the best help I could have hoped for.  You all play such important parts in my life, my surrogate mamas (for when mine isn’t here), sisters, best friends, some of you make me laugh and some of you comfort me. Some of you kick my butt when I mention giving up, you really rock!

Around a week ago I was having a terrible day where I literally overdosed on baby / children pictures.  They are ALL over the Internet and impossible to avoid when you’re doing what I do.

I sat in front of my computer crying my heart out, completely broken inside at a loss so I sent my friend Martina a message to ask her for help.  She came back with a great idea.

She set up this thing called a “thunderclap”, it’s a group message which will be sent on the same day at the same time from everyone’s account if they have signed up for it.   It’s free and her message just says that a small donation of £5 could help make my dream come true. (It has to say £5 because unfortunately GoFund will not accept less, they have to be paid too).

Not everyone is familiar with this concept, I wasn’t, it’s basically a huge shoutout and based on the amount of followers that the participants have, it gives us a potential audience reach.  The minimum amount of people who have to take part is 100, the rest is a bonus.

I’m pleased to say that we have reached Martina’s target and she worked really to get us there.  At the moment we have a potential target audience of over 450 000 people, we have two days left.  That means that on the day, quite a few people could see her message appear on their social pages. This could give us a boost.

As Shaun says it’s a number’s game, the more you get seen, the better chance you have that someone may be interested and want to help.

Martina, I thank you, from the bottom of my heart. You have put your heart and soul into this and I appreciate it more than I can ever say, you are a star! And a huge thank you to Abbie for your wonderful blog about us as well as the Piggies family and Keith for all the promotion.

Thank you to everyone who’s taken part so far, Martina would like to try and get a few more people on board so she can reach her goal of 500 000 people.  Half a million people sounds huge and even if just 1% hear me then who knows what could happen.  Please join in.

Of course I’m trying to be positive about this but the anxious side of me just keeps telling me all the things I’ve just told you about.

I hope you understand, I don’t pretend to be special but if I’m going to talk about infertility then I have to be honest, I can’t just hide behind a happy Dotty and stay invisible, I’m right behind her and I have feelings too.

I may only have a few of you reading me and interested in what I have to say but you are here and I never take you for granted, without you I wouldn’t be where I am today. Don’t give up on me please.

You are all amazing and I thank you.

Steffie x

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