LiveBlogging IVF – Is It Appropriate?

I’ve thought long and hard about how much of our IVF experience I want to document and share. I’ve been hesitant for reasons of personal privacy. For not wanting the pressure of everyone knowing exact dates and the expectation of an announcement of pregnancy or otherwise. I’ve been hesitant about putting it out there on the internet when not all of our friends and family even know what we are embarking upon. I’m aware too, that it’s of little interest to most of the people that read my writing, and I don’t want to become an infertility bore.

Ultimately, however, I’ve decided that I want, need, to record this process, and whatever the outcome is, so that I can look back and remember what we went through to create our second child, or remember that, yes, we really did do everything we could to make that dream a reality. I don’t really feel the weight of expectation of our pregnancy outcome. I’m long past dreaming that I could announce a pregnancy as a surprise; I’ve been talking about trying to conceive for at least a year now. I might not choose to share the outcome of the cycle immediately. That might be because I’m pregnant. It might be because I’m having a hard time processing and accepting the fact that I’m not. Either way, you’ll have to wait until I’m ready to share that information. Choosing to write this experience down in my own words does not equate to choosing to give up control of what I share. 

And I want to share it for another very important reason. I want to share this journey to add my voice to all the others who have walked this road before, and to offer information, solidarity and support to all those who will follow after me. There is surprisingly little good quality information written from the patient perspective about assisted reproduction, especially in the UK. There is even less about IVF as experienced by women with type 1 diabetes. The fact that I’ve been looking for this information suggests that there are likely to be others who are too. And I’m happy to put this down, and to share my story, however it pans out. If it can help just one other person, it will be a job well done. And if I can gain just a tiny bit of support for myself out of it, that will be fantastic too.

Because that is what is at the heart of almost all patient-perspective writing about health: Support. A small word, but a massive concept.

Who is anyone outside the arena of what is being shared to judge those of us going through it? 

I’m prompted to ask the question because it seems that there are some people who feel sharing the details of an IVF cycle online is inappropriate or undignified.

My first reaction to this is actually to feel hurt. Because that implies that it is OK for many hundreds of thousands of couples to have to live with this reality, but that we should go on doing it behind closed doors and in secret. To me, that attitude belittles how tough this journey can be. Of course there are worse things that can happen, but as I’ve said before all suffering is relative. Infertility is hard. Going through infertility treatment is a roller coaster of chance and hope, worry and fear. It may not be life or death in a traditional sense, but it the making or breaking of dreams and wishes and the outcome can change your life and the plans you may have had. In addition, the relatively short span of any given treatment cycle can make all those emotions seem enormously intense. The only people who have a hope of really knowing what this feels like are other people who have been there. And the only way to find them is to share.

Infertility my not be chronic, let alone terminal, and I’d never try to equate it to any other condition, but questioning the appropriateness of sharing the infertility experience to me is akin to questioning the ethics of sharing a cancer battle – a point I raise because it is something that has met with prominent backlash strong enough to lead to withdrawal of the article in question by Emma Gilbey Keller on the US Guardian website in recent weeks. Keller drew attention to the story of Lisa Bonchek Adams who is chronicling her battle with breast cancer very publicly across social media channels. “Are her tweets a grim equivalent of deathbed selfies, one step further than funeral selfies?” Keller asked. Tied up in this one statement is the belief that this level of sharing is rather tasteless – inappropriate and undignified perhaps? It’s not only offensive, it also completely misses the point.

If such things make YOU uncomfortable, YOU should turn away. Those of us in the thick of our stories don’t have that option.

The uproar around Emma Keller’s article relates specifically to Lisa Adams and her cancer treatment, but the issues are equally relevant to all forms of patient-perspective writing and social media usage. As Kerri Sparling puts it in her eloquent piece on the same topic “Being honest about life with illness and disease can be the best, albeit non-prescribed, ‘medication’ yet. Whilst it may also frighten and unnerve, honesty and community can validate, and empower, and inspire.”

Like Kerri, I’ve already benefited from this at first hand in the online diabetes community. And when I was diagnosed with epilepsy, online was the only place I found I could talk about it without fear of judgement. And that’s a big thing. The internet has opened up the opportunity for so many people to share things from behind the safety of a screen that they might otherwise find difficult in person. It has also helped lessen the obstacles of time and geography and given us access to the opportunity to meet far more people, so whilst our in-person networks of friends may not include anyone who has shared a similar experience, online such a person is only ever a click away. 

These are the reasons I’ve decided to be honest about our infertility journey and to share the experience. There are so many good reasons for me to do so, and very few reasons not to and as such, if it’s really a question of ethics, I feel like it would be more wrong not to be open. If it doesn’t interest you, or offends you in any way, you can skip right on by. My writing will still be here if you ever find yourself in my position in future.

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4 Replies to “LiveBlogging IVF – Is It Appropriate?”

  1. I think it’s great that you are blogging throughout your IVF treatment. I’m very much a fan of being open, and honest about things like this, I wrote about my birth trauma and now post about anxiety and depression a lot which I know some find oversharing but I know it also helps other people too, and that’s important.
    I wish you all the best in your journey, and I hope you are successful soon xx

    1. Thank you Lauren. I think there is so much to gained from sharing these things openly. My favourite blogs are always the ones which are open and honest about real life, warts and all! I hope you go on sharing x

  2. I enjoy reading your blog; it is most certainly one of the very best written I’ve ever come across, and if you want to share, then share away. Who cares what other people think? If they’ve got a problem, then it’s their issue.

    I wish you and your family all the best of luck during your journey!

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