Why the 'never give up hope' narrative around IVF is problematic

And how alternative, equally hopeful stories need to be told.

Photo by Colin Czerwinski on Unsplash

Last Christmas/New Years was kind of a tough one. I’d had 4 failed fertility treatment cycles that year, one early miscarriage, and it culminated in November when we had to put our dog of 12 years to sleep two days after finding out our latest IVF cycle hadn’t worked. We were rolling into the festive season with our fur child gone, our latest chance of a child gone. We found out the cycle hadn’t worked and that I wasn’t pregnant via an email by the way. One of the top clinics in Australia, who had charged us over $10,000 for their services (just for that cycle) couldn’t get me on the phone, so I found out via their cold, templated email that always follows any result phone calls… more on the patient experience failures of IVF clinics in a further piece. Far out do I have a bank of experiences to share there.

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Ah IVF clinic emails. Smashing future hopes and dreams in six words.

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It’s around this time of year that pregnancy announcements are common on socials, and last Christmas is when the ‘never give up hope’ message started to feel really uncomfortable and, well, dismissive, and completely out of touch if I’m being honest. It’s common to see an announcement of a long awaited pregnancy after an infertility struggle captioned by something like: ‘Keep chasing your rainbow baby’, ‘Never give up hope’, or ‘Keep manifesting your healthy baby’. These are a few I remember seeing around this time of year from people with public profiles. I want to caveat this by saying I am always unconditionally happy for anyone that falls pregnant after infertility. It can be a f***ing awful ride, and everyone wants to get to the outcome - a healthy baby.

This never give up narrative had started to really grind my gears because we were starting to entertain the ‘When is enough, enough? question on our treatment journey. Our fertility specialist had told us a few weeks before Christmas that we probably had a 50/50 chance of falling pregnant if we did another four egg collection cycles, and all the transfers of any resulting embryos. So… we dish out another minimum 40K, and go through the emotionally, mentally, logistically, and physically gruelling process of IVF at least another four times for a 50/50 chance? What happens if we go through with all of that and we’re in the unlucky half? Do we go another four times? Will that give us another 50% chance, or a cumulative 100% chance? The specialist couldn’t answer that question. We also got a second opinion and asked similar questions, and got different answers. She said for us, we had around a 10-12% chance of a successful pregnancy for each full IVF cycle. They just don’t know. There is so damn much they don’t know about IVF and unexplained infertility (our very helpful diagnoses), and let’s be honest women’s health in general. I appreciated the specialist who we saw for a second opinion was at least honest about how little is really known in this area. Something most clinics are not good at talking about. Because why would they? They are commercial entities at the end of the day.

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Maybe to some, making that financial, emotional and physical investment and the toll that all takes, is completely worthwhile for those odds. I completely respect them. To my partner and I that seemed like a cruel lottery. We agreed we didn’t want to keep rolling the dice that many times for such ridiculously low odds. I wish people understood this is the decision you continue to grapple with after each failed cycle.

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We didn’t want to keep spending years of our lives with infertility treatment being the backdrop - sacrificing travel and other investments, continuing to follow strict fertility friendly diets, scheduling work and life around treatment appointments, downing handfuls of supplements each day, seeing complementary health professionals and everything else involved in riding the fertility treatment rollercoaster - to end up in our early 40’s with a 50% chance of not getting the baby. Having blown all our savings in the process and left with no money to build our childfree future. And not all specialists we saw agreed on those odds we were basing our decisions on anyway.

So coming back to the IVF warrior ‘never give up’ rhetoric. Again, I’m genuinely thrilled when people fall pregnant after an infertility struggle. But this narrative assumes that everyone will make it to the other side and that is just not realistic or the truth. It also assumes that everyone on this shitty journey has the physical, emotional, mental and financial means and resilience to keep going and going. Everyone has different limits and means available and when all you see is ‘never get up hope’ it makes you question your strength, character and determination if you are entertaining ‘giving up’.  It’s like if you decide to pursue other paths you didn’t try hard enough, didn’t manifest hard enough, didn’t give enough. But when is enough, enough?

I do believe in practical manifestation, by which I mean being clear on what your desires and goals are, why you have those desires and setting aligned intentions and actions to move towards them. I have

Alice Rose

to thank for helping me there. But it’s not realistic to suggest that any degree of manifestation can cure infertility. Or that if you do the work on your physical, mental and emotional wellbeing, and just keep going and going, then you will get your baby. It’s so easy to say ‘never give up’ when it does work out, but this minimises the very real experiences of those that it doesn’t work out for.

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I think the fertility industry and community on the whole, shies away from the fact there isn’t always a fairy tale ending in the form of a rainbow baby after an infertility struggle, no matter how hard you fought, tried and sacrificed, and that there is a significant degree of luck and good fortune that comes into play.

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I have a very dear friend who has been on this path for a similar length of time as I have. When we were chatting recently about this she said something along the lines of, ‘the truest IVF warriors are the ones who have the resolve to pivot their life when IVF doesn't work out’. I don’t believe in creating divides between those who do and don’t get the intended outcome, and I also really dislike the term IVF warrior. As we often don’t feel like warriors, and the term creates an expectation you have to be strong and stoic all the time, which is quite simply, draining AF. We didn’t choose this journey, we’re just doing the best we can with the cards we’ve been dealt. 

I think what she meant though, and what I believe, is that the strength and resolute that comes with making a decision to stop treatment, is not talked about enough and that we don’t have enough representation in the fertility community, and society broadly, of those who have done that and are living lives they may not have originally expected, but are still filled with hope and happiness (pronatalism and the patriarchy has done a good number trying to make us believe otherwise). They just pivoted their focus and hope towards other dreams and goals.

Anyone who has been through an infertility struggle is a ‘warrior’, whether they get the planned outcome, or their outcome looks different to what they initially imagined. But I know one thing for certain, regardless of where I end up, you won’t find me telling anyone to ‘never give up’ when pursuing fertility treatment.

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