Last week I went to an event that I was delighted to be invited to and support. The Fertility Network Uk is launching a campaign to get a debate in Parliament to ensure that CCGs are required to follow the NICE recommendations on NHS IVF Treatment.
Last year @FertilityNUK invited me to speak at the House of Commons on a panel about getting fair funding for IVF nationally. Most CCGs in England ignore NICE and the price is paid in mental illhealth, financial debt and shame amongst heterosexuals and LBGT people, in all ethnicities, all abled and disabled people alike. (It also costs the NHS a packet in unexpected costs ….)
On my way to the event last week, I spot a friend I haven’t seen for a while. We do the hugs and the “where-are-you-off-to?” chat. We’re both moving at I’m on a mission speed. I tell her mine and she hers, and then she tells me that someone close to her is doing IVF. She had no idea about how it’s still so hard for people to talk about it: with families and at work for all sorts of reasons. Five minutes on this high-level sharing stuff and we hug again and part company.
Two minutes later I find the place, and maybe because of that chance conversation -London is like that – and maybe because a load of the people I’m about to meet have experienced the shock, disappointment (understatement) confusion and isolation that many people feel at the outset of IVF – never to mention how they feel by the end, maybe because of that, I find I am that woman again. The woman who had lots of miscarriages and had to resort to IVF and moved around in secret and shame.
At Reception, there’s time to cheer on a woman who is part of a mentoring programme to stand for Parliament. I’m thrilled for her. Parliament would be lucky to get her.
And then at the lift, someone (who I realise later works for the agency who have made and are running the campaign probono) asks me if I’m excited. “Yes” I hear this thin voice reply – it’s my voice – clearly meaning the opposite. I am simultaneously wondering why she’s asking me such a question, (has she no idea what this is about) and reminding myself that she doesn’t know I’m the woman for whom IVF DID NOT HELP.
The goal of this campaign is to get the right to try which is very very important. But it’s not the end of the story. People who haven’t been there don’t know how many struggles have happened to get to that point. And how many more trials there are to come when a pregnancy ends in pregnancy loss (and how many different ways that can happen) or no pregnancy at all. And suddenly I’m that woman again. I’m the woman who failed at IVF.
The next fifteen minutes are all about the mechanics: get a drink (a softie for me a very restricted choice given how many people here might be trying IVF), a tweet and re-introducing myself to a couple of people. My brain has departed and I try to style it out as menopause brain.
Possibly unnecessarily, but it’s what I have in the tank (and note to self to prep emotionally next time), and because I can’t be here unless I say it, I out myself as an IVF SURVIVOR. Meaning that we had the 7 miscarriages from natural conceptions and then we did the IVF and then we stopped. Our choice. We weren’t told there was no more hope but we had run out of hope for ourselves, and we needed to do something else. Bodily, mentally, emotionally and financially depleted, we made the choice to turn our faces in another direction and see if we could make a life without children. Rewrite the script of our lives and our marriage. And the conversation moves into the advances of IVF and it’s fascinating and really interesting, and I am so glad to have come.
And on my way out of the event, after having been the first person to lend their scream to the social media campaign, I am getting my stuff together and a younger woman (I’m 51 everyone’s starting to look young now) says to me:
“Can I ask you a question. I heard you say you’re an IVF survivor and I wondered what you meant”. And then I become the woman I wanted to be for years during the dark days. The woman whose experience counts for something. It’s a role I’ve found by degree. It wasn’t obvious. And it isn’t always easy. No-one wanted this story – except if it was to tell me that I’d get there one day, I’d just have to stay hopeful (wrong – please never say this to someone going through infertility, neither should you invoke fate or a deity).
With that question, I become the woman who could help another woman through this minefield of shock, disappointment, struggle for treatment, more disappointment, grief (yes you can grieve for what you never had – and every miscarriage is a grief however early), the PTSD of losing the script of your life. I could help her start to think about alternatives – because she wanted to, and share with her the rage of the injustice and arbitrary unfairnesses, and the fact that it never quite goes away – like any grief.
I tell her that we stopped because we had no emotional energy left. We had started to feel exploited and experimented on by the private practitioner (because we couldn’t get NHS treatment) who seemed to regard my body as a meccano set. Who talked in adversarial terms of “his side” and “our side”. We thought in the end that our life together as a couple perhaps could mean something without children.
We felt like failures. For a while. Quite a while. People made veiled criticisms that implied we were selfish for not adopting. I think we were selfless. We were in no state to become parents to a child whose early life had already been tricky (I speak of us and our emotional state, no-one else).
I was able to share with my new friend, the idea that you can’t get your old self back but she will get through the depression and start to laugh again and be another version of herself, built by these experiences into a different kind of adult. Facets of her frustrated maternal instinct will come out in other parts of her life but she may always feel that need to be pregnant (I still do occasionally), and now as my sister becomes a Grandmother – and I never will – there are always new vistas of challenge opening up.
I’ve lost a few friends who didn’t get it and others who are great. I’m passed the point where I feel like the wicked fairy of doom turning up with my infertility and childlessness at social events (although there were moments at this launch) where everyone is a parent and there is no other topic of conversation. And I’ve still got a body that bears the scars of miscarriage and lots of interventions, and the side effects of IVF. You can talk about what pregnancy does to you but you’re not allowed to talk about it, if you didn’t come home with the prize. Be kind, women, let us in to the conversation.
I’ve found new friends who made different life choices, and so I have over years worked at creating a very full life interacting with other people’s children and with people who don’t have kids.
And I’ve accepted my grief and rejoiced in a 27 year relationship with the best of men. But I’ve still got the scan photos of all my pregnancies. And I still succumb to very low days and tell myself this is a low day and it will get better.
The #Scream4IVF campaign is very important but so is understanding that it doesn’t stop there. The aftercare after IVF whatever the result is really important whether you are IVF partners looking after each other, medical professionals, counsellors, family, friends, colleagues, employers. Do not assume that everything’s fine if a baby comes or they stop trying, or if they stop talking about it. There’s still a damage, a bruise.
The good news is that the shock of infertility is awful and long-lasting but it doesn’t have to last forever.
This young woman who was brave enough to ask a total stranger a question, gave me such a gift. I hope I helped her too. And that this helps you either to understand one experience, mine, I don’t claim to be representative. Or to cope with your own.
Blogs should be short – sorry this one isn’t.