It's no secret that issues with fertility are, sadly, common. According to data from NICE, roughly one in seven heterosexual couples in the UK who do wish to have a family will run into difficulties with becoming parents.
As such, a thriving online community, known as 'TTC' ('Trying to Conceive') is active over social media platforms, like Instagram. Here, people trade stories of the intricacies of IVF and the pain of negative pregnancy tests and share their hopes of what the future might hold.
When writer Seetal Savla found herself in these digital spaces, however, she noticed something. This is that while the posts made her feel seen in her suffering, they did not make her, as a South Asian woman, feel represented. This is despite the reality that Asian patients represented 14% of IVF patients in 2018, although this group makes up only 7% of the UK population.
Here, she explains why she is determined to be vocal about her quest to become a mother, for the sake of others who share her ethnic heritage.
I first decided to share the story of my fertility issues in a blog post on Mother’s Day 2019. Until that day, as a writer covering restaurant reviews and chef interviews, my site was mostly about the intracies of the latest pop-up's crab-stuffed doughnuts or the best places to eat in Brighton. But, unbeknownst to almost everyone, my husband and I had recently suffered a devastating miscarriage and two unsuccessful IVF cycles.
Keeping this a secret made me feel like I was living a double life: I was portraying a carefree, adventurous existance digitally while healing a broken heart and drowning in a sea of fertility drugs IRL. It was an increasingly overwhelming, isolating and suffocating experience.
That day, I poured my heart out onto the virtual page. Soon after doing so, I received message after message from family members, friends, acquaintances, and strangers – many of whom had found that my words spoke to something in their own lives.
So far, so relatively ‘normal’, you might think. Except, it's not. Because in the community I come from – the South Asian diaspora in the UK – there is a stark lack of voices contributing to this conversation in online spaces.
How many Asian people struggle with fertility?
But, with more Asian patients undergoing IVF (14%) in 2018 compared to the UK population estimate (7%) according to the HFEA’s Ethnic Diversity in Fertility Treatment report (the UK’s fertility clinic regulator), why is discussion of infertility still so taboo in our culture?
Growing up in an Indian household in Leicester, difficulties to do with the menstrual cycle and reproduction – from painful periods to polycystic ovaries – were not topics that were regularly discussed. In my experience and the experience of many other South Asians I know, it's normal for older members of our community to not be sensitive to our potential reproductive challenges either; inadvertently piling on the pressure to procreate with well-intentioned comments and questions from the second a wedding certificate has been signed.
What is the 'TTC' community?
Thankfully, when going through my own agonising journey over the past few years, however, discovering the Trying to Conceive (TTC) community on Instagram showed me that I didn’t have to hide my pain or truth. Seeing women’s posts, reading their comments and listening to their podcasts was a revelation: I finally felt seen and validated.
Why is there a lack of South Asian voices in the infertility conversation?
The one thing I didn’t feel, however, was represented. This was due to the lack of South Asian women speaking about infertility. We’re repeatedly told that infertility doesn’t discriminate and yet there were very few women of colour adding their valuable voices to this conversation. While there could be myriad reasons for this, when it comes to those of South Asian heritage, I understand this to be in part, at least, to the pressure and stigma that many experience from within the community.
If a couple are struggling to conceive, our society, which can be more patriarchal, will typically blame the woman – making us feel ashamed and less worthy than the fertile women in our families. This fear of judgement causes many of us to suffer in silence and can erode our self-worth and confidence. Even if the diagnosis in a specific instance is male infertility, the woman may still be held responsible for her 'failure' to have a baby.
Wanting to pay forward the support that the wonderful TTC community has given me, and to connect with other South Asians in a similar situation, was what led me to publish that blog post, that Mother’s Day. I'm not the only South Asian woman seeking to crack open this conversation, as it pertains to the various cultures which exist under this umbrella.
Kajal Pankhania, who Instagrams @Aurelias_Wish, lost her daughter Aurelia at 23 weeks. 'People are made to feel [ashamed about stillbirth] because others find it uncomfortable,' she says. 'I use my platform to help others like me feel less alone, educate society and break the silence.
'I want to be part of the wave of change, the one that drowns out and washes away the stigma. I will keep talking, for me, for Aurelia and for every mother…who has had to say goodbye too soon.' Kajal’s admirable honesty has encouraged her elder family members to become more attuned to their emotions and be less afraid of displaying them.
Kreena Dhiman (@kreenadhiman) felt equally underrepresented on joining the online surrogacy community. Following a breast cancer diagnosis at 33, she underwent urgent IVF to preserve her fertility prior to starting chemotherapy. But when Kreena tried to find surrogacy stories with which she could identify as a South Asian, she didn’t come across a single one.
She says she searched: 'high and low for a face like mine: An Indian girl who had navigated her way through this complex route to motherhood. I failed to find her, so I decided that I needed to be her, and have shared my story as a result.'
Does sharing stories of infertility help?
The significance of this sharing resonates for Julianne Boutaleb, a perinatal psychologist who specialises in working with individuals and couples experiencing infertility and pregnancy loss. Dealing with these difficult issues alone can make couples feel 'disconnected and emotionally isolated at a time when they need their support networks most. Over time, this isolation can also contribute to increased stress, depression and anxiety, and put more pressure on [them] at a time when they are most vulnerable.'
She advises her patients to share their story with 'a few trusted others' for much-needed support. In doing so: 'you give others permission to share [theirs]. There’s something life-affirming about somebody being authentic about their struggles.'
But as privileged as I feel to be in this position, it can be challenging. Sharing our fertility journey and re-hashing our pain in real-time over the past two years – which has included a further two unsuccessful IVF cycles, a pregnancy through donor egg IVF and a miscarriage – takes an emotional toll on my husband and I.
It's also true that, since few South Asian women are speaking publically about their innermost feelings on this struggle, it’s easy to assume that my words represent what others feel when facing fertility issues. However, my experience is entirely my own, although one which I hope makes some other South Asian people feel less alone.
Ultimately, by documenting our experiences, Kajal, Kreena and I are determined to work to destigmatise infertility, stillbirth, IVF, cancer, donor conception and surrogacy among our communities. We, and others, are striving to turn our pain into power.
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