I’ve written a fair bit on this blog about cancer, infertility from chemo, failed IVFs with pre-chemo embryos, and the subsequent confusions, upsets, sadnesses.

Along with all the more cheery, easy to talk about stuff, these things are very much a part of who I am, therefore they often come up when I give talks or keynotes or am on a panel, especially when I’m talking about diversity and inclusion – the need to be inclusive of people who don’t fit the ‘norm’ (the majority of adults are parents/have children); the need to be inclusive around illness and its repercussions – issues such as chronic pain, ongoing disability, ongoing illness; the personal impact of cancer (both times) and infertility on my own mental health and how important it is to acknowledge issues of mental health in relation to inclusion.

So, it’s all joined up, but yesterday at Fertility Fest was the first time I’ve ever been asked to speak specifically about my own experience of infertility. I’ve been hugely impressed by Jessica Hepburn and Gabby Vautier for creating this festival – given the vast amount of money to be made and the increasingly corporate/monied nature of the in/fertility industry, to have a fertility festival that is about the issues, emotions, gains, losses, human nature – rather than yet another showcase for fertility clinics – is a great step forward.

On Saturday I wrote up some thoughts, with the awareness that I never actually read any speeches I write, I always end up improvising, depending on what else I’ve heard, what I’m feeling, who else is speaking, who is in the room. On Sunday morning I woke up feeling very down, very low. The idea of taking myself to speak in person about my loss in front of a room full of strangers, just felt so hard. But the right thing to do, and so … I did some yoga (and cried), I chanted, meditated, and got on.

And I’m so glad I did. Here’s what actually happened – scroll down to Fertility Fight Club Day 3 – and below are my slightly more tidily-presented points, more or less the same stuff, one has some tears, one has neat paragraphs!

Yes, I did want children. No, I don’t want your children.

It’s interesting how people feel the need to say something, anything other than a simple “oh dear. I’m sorry” in response to bad or difficult news. When I had a mastectomy and reconstruction after my second breast cancer diagnosis, and chose DIEP reconstruction (implants are not recommended after radiotherapy for an earlier cancer), the reconstruction needed tissue, blood vessel and some fat from my stomach. I was so surprised by the number of people who said “you can have some of my stomach fat!” like that was an appropriate response to a cancer diagnosis. I get the reason – wanting to be light, wanting to be warm, wanting to be generous – but I found it really odd to hear. It was also odd when, while trying and failing to have children after chemo and after Shelley had miscarried, people said “Oh you can have my children, they’re driving me crazy!” but I don’t want your children – you’ve just told me that even you don’t want your children!

Why do we find it so difficult just to say “that’s hard”. “I’m sorry.” ‘How tough for you.” Why is it so difficult just to allow that loss is?
Or that there is anger accompanying that loss.
And when did it become so problematic for us to say we’re angry about loss? There is so much shaming around fertility issues, I have found myself, for years now, downplaying my own anger, as if anger is something we must hide, run from – god forbid we should look at it and deal with it. God forbid that anyone else should know we are ever angry!

Losses and heartaches are vital parts of who I am – and, right now, mostly, I’m good with who I am.
It’s taken loads of therapy and mindfulness to acknowledge and grieve my losses – and this acknowledging and grieving is, of course, ongoing. It takes loads of yoga and pilates and running to deal with the chronic pain post-surgeries and chemo. It took bloody hard work with no sick pay or compassionate leave, because freelancers don’t get any of that, on top of surgeries and chemo and radiotherapy and all the other crap just to stay alive, but I am, mostly, good with who I am.

One of the things that I am is someone who wanted to be a mother and didn’t get to be a mother.

And one of the reasons that infertility/childlessness is so difficult for those of us who live with it, is because it makes parents so uncomfortable.
In order to try to understand, parents often imagine life without their own children and of course that imagining hurts them. But when parents imagine my life is like their life BUT WITHOUT THEIR CHILDREN that’s not empathy, it’s self-centring. Which often leads to pity. And pity goes nowhere, drains strength, weakens us. Pity others us. And we non-parents are othered enough as it is.

One of the reasons there seems to be no other way for people to imagine what it is like is that we have no language for ourselves.
I’m proudly out (queer, dyke, lezz are all fine with me), I’m proudly menopausal (I’ve been so since chemo 18 years ago!), there are no words of pride for who I am as someone who did not procreate.
INfertile, childLESS.
Even the supposedly-positive ‘child-free’ is ABOUT THE CHILD. Our language centres the child that is not, instead of the person who is – me.

Because of the language we are stuck with, language that is child-focused, even when the children did not eventuate, my SELF – who I am now – is denied. And this is a huge problem.

If we do not have words for ourselves, we cannot communicate.
If we non-parents can only name ourselves by saying what we are NOT, then the non-parents and the parents are only ever going to be on one side or the other, and dialogue, the essence of understanding between us, becomes so hard.

Because it’s actually not about the children, the dreamed future. Once that dream has well and truly died, what we’re left with is ourselves. The life we dreamed and didn’t get, and the life we have now.
And that’s ok, the life we have now. It has to be ok, because it’s how it is.
It’s ok to feel loss, to grieve, to find joy and value in a life, in my life, anyway.
Losses AS WELL AS joy. Hope AS WELL AS sadness. That’s any life.

Our lives – the lives of the non-mothers, not-fathers, un-parents (the thing we don’t have a word for) are a bit more unusual, less documented, less written about, less shared.
Partly because it often pains us to share the truth, partly because it is hard for those with to understand how it is for those without, partly because our society is so heavily based on the family unit, on the idea that we are not families unless we have children (which weirdly negates the families we were born into!), and partly because the only words we have for ourselves are words of lack.
Let’s share these stories more.
And let’s find some better words for ourselves so we can share better.

I have an idea there might be better words in other languages – I’ve welcomed being called whaea (Maori for aunty, and also often used as an honorific for elder women), there must be others? Please share them here if you know of any.