Prometheus News


Instagram has become my IVF support system

Dec 9, 2019 by William Lewis.

When Emma Forsyth couldn’t get pregnant, she felt distanced from her friends – but the infertility community of Instagram rallied around her.

On a stormy Saturday not long ago, a specialist broke the news to me that one more round of IVF was dropped on the grounds that my body had allowed me to down. As I left my facility, wailing and baffled at having fizzled, for the third time straight, to arrive at the point where one of my solidified undeveloped organisms could be put inside me, a message sprung up on my telephone. "How could it go?" A couple of moments later, another: "Deal with yourself." These messages weren't from my closest companions, determining the status of me – these were consolation from a gathering of outsiders.

I've been trying for a baby for three years, and during half of that I have been having IVF. For the one-in-seven couples experiencing it, infertility is a deeply lonely experience. While some of your friends are merrily popping out kids, the rest haven't even thought about it yet and you’re stuck somewhere in between. Neither group understands the desperation, and cycle of grief, which comes from getting your hopes up each month, only to have them dashed by a single line on a pregnancy test, or the misery that results from months of self-injecting, popping industrial quantities of hormone pills and, in many cases, emptying your bank account, only to discover none of it has worked.

When you’re going through such a stressful time – indeed, a study in the Journal of Psychosomatic Obstetrics & Gynecology has likened the stress levels to those living with a cancer diagnosis – opening up to people who don’t understand what you’re dealing with is a risky business. For those of us who do feel able to talk about it, well-meaning friends’ reactions tend to turn into a sort of infertility bingo: responses invariably include, “it’ll happen – just relax”, “can’t you just adopt?” and the old classic, “you can have my kids, if you want” (yes, please, actually. That would save me a lot of hassle. How does this work? Do I need to sign something or…?).

But that loneliness began to ebb this year, when I discovered the infertility community on Instagram. Here were other women cheerfully complaining about the awkwardness of self-injecting, laughing at strangers’ reactions when they gave honest answers to the question “why don’t you have kids yet?” and worrying about what to wear when their ovaries were so swollen with hormones that having anything pressing against their abdomen was agony (answer: dungarees. Always dungarees). As I approached my first round of IVF, I had spoken to other women who had been through it and I had even braved Mumsnet looking for advice, but these women on Instagram were exactly like me – roughly my age, as addicted to lipstick as I was and, crucially, we were all going through this at the same time.

During those extreme lows, an army of women was ready to slide into my DMs, and when the long periods of waiting became too much, there they were, helping me to keep going

After a few weeks, I started an infertility-only Instagram account, and began to build a community. Suddenly, when my consultant was confusing me, I had other women to turn to who had gone through the same thing, and when my womb lining was too thin, I received a dozen messages with different solutions I could suggest to my doctor. During those extreme lows, an army of women was ready to slide into my DMs, and when the long periods of waiting became too much, there they were, helping me to keep going.

Some choose to use their real names, while others keep their identities hidden. It doesn’t matter. Either way, we are united because we are all experiencing infertility, which manifests itself as an agonisingly long, drawn-out trauma.

A couple of weeks ago, I met some of the people behind the profiles at a rally in Westminster, organised by the charity Fertility Network UK, and, like any group of childless people in their thirties and forties, afterwards we retired to the pub. These women, I learned, are unbelievably tough. As the wine flowed, so did the tales of horror, from experiences of multiple miscarriages to comparisons of less-than-sympathetic clinicians; these were battle-hardened soldiers, and we were all fighting in the same war. For the first time in three years, I felt completely at ease talking about the thing that has come to dominate my life.

Infertility is an issue that, until recently, was kept private by those going through it. Instagram may have begun as a place for selfies and pictures of millennial lunches, but it has also given a voice to those who can’t bring themselves to talk about it in real life, and united a community that was previously kept disparate by its self-imposed silence. The platform may have its problems with trolls and harassment, but, for our community, it provides a sanctuary. And, on that rainy Saturday, as I left my clinic, I was grateful for it.

Emma Forsyth is the co-host of Big Fat Negative, the podcast about infertility, IVF and the trials of trying for a baby