Refinery 29 UK
Struggles with infertility are a devastatingly common problem that affects one in seven straight couples in the UK. Not only that, but it’s a problem that’s growing: ONS data shows a record low of birth rates in 2018 and points to the combined factors of ageing populations and falling fertility rates. But while the breakdown of infertility rates by ethnicity are not documented by the NHS, figures from 2019 show that the majority (66%) of people seeking treatment for fertility are white. This is emblematic of a much larger problem of who gets to talk about, and who gets access to treatment for infertility.
As Sally Cheshire, Chair of Human Fertilisation and Embryology Authority (HFEA), said at the time those figures were published: “We know that some patients from an ethnic minority background face unique cultural and sometimes religious challenges when they struggle to conceive. We recognise that there is still a stigma attached to infertility in general, but it’s important people know it’s a recognised medical condition like any other.”
Those that are speaking out about it report several factors co-conspiring to stigmatise infertility in Muslim communities. Some women cite undue pressure to have children. Other women report that discussing infertility or child loss in and of itself is taboo. There is also, for many, a mistrust of the NHS and the prevalence of conditions that impact fertility may not be fully known. There’s also growing evidence that two conditions that are major causes of infertility (PCOS and endometriosis) disproportionately affect Black, Asian and minority ethnic women.
All of this is exacerbated by the fact, as Dr Pragya Agarwal points out a piece for The Independent, that the public face of infertility and IVF is a straight, middle class white woman in her early- to mid- thirties, a culturally generated idea that suggests infertility and baby loss only affects or is important to one type of woman.
But that doesn’t mean no-one is talking about it. On social media, spaces of support and resilience are working to change the narrative about fertility among Muslim women. Sama and Ruksar from @muslimah.support, an Instagram page providing support to Muslim women struggling with infertility, miscarriage and all things in between. There is also Farah, a life coach from @inspirehercoaching who, together with Sama and Ruksar are just three of those who are providing emotional support, comfort and messages of hope to others like them. Under hashtags like #musliminfertility and #muslimttc (‘ttc’ or ‘trying to conceive’ is a common acronym in infertility forums) these women are documenting not only the struggle and pain of their own experiences, but are also serving as a specific support group for others like them. In doing so, they are slowly shaking the taboo of infertility amongst their own community, pushing for better medical and community support and, most importantly, providing a message of hope. Here are their stories.
It all started when I hit puberty. I had irregular periods but didn’t think anything of it. In fact, I was happy that I never had periods. No monthly bleeding, yay! But I didn’t realise the severity of it, which is why I never got myself checked.
After only a few years, the weight piled on. I went from a size 8/10 to a size 14/16. I went to the GP and they blamed my studies, saying that it was stress. I persisted, I told them time and time again that it was something else. Finally, after three years, I got diagnosed with PCOS but I had no knowledge around it and kept getting fobbed off. It didn’t worry me though as I thought I’d never get married. I thought, “who’s gonna marry me anyway?”
I was wrong though, I did get married. And after five years of trying for a child we weren’t getting anywhere. I lied to myself, saying that I’m not the issue. When in fact, I am. I lie to myself, saying that I don’t want kids, when in actual fact, I do.
My heart yearns to be a mother, yet I am never there.
Some days I feel so alone. I don’t speak about my troubles. But since making our Instagram page I have realised that there are so many other women out there who feel exactly the same way.
My whole experience has been distorted by being a Muslim woman, by the ‘Bengali shame’ – where we’re pushed into thinking that miscarriages are shameful and the woman’s fault. I feel there is little-to-no support in the Muslim community in all honesty.
We use the account to share stories and support one another. We always inform readers that we are not medical specialists and are not trained but we support through our own experiences. Sometimes, all people need is someone to talk to that isn’t directly involved and someone who will take them seriously. In my experience, doctors just don’t. I suffer from PCOS and the doctors were only focused on my weight. I discharged myself after they called me fat and told me I would never carry a baby full term.
There were times when even my faith couldn’t keep me going. There were times when I think ‘why me?’ But there are so many verses in the Qur’an that say that once the storm passes, there will be ease. Fa Inna ma Al usri yusra.
I got married in 2014 and went straight on the pill but came off it about a year later to see what happened. Obviously I thought I would be pregnant within a few months after all the scares we got in school about it. But after trying for a year we had to go to the GP to see what was going on, and it was followed up with many, many tests. But even though we couldn’t get pregnant, all the results came back normal.
We had three rounds of IVF/ICSI funded by the NHS that resulted in no embryos, no pregnancies, and no reason for fertility issues found. Our diagnosis in the end was ‘unexplained subfertility’. The last round of ICSI was emotionally and physically so extremely hard that we decided to take a break. That break lasted four years.
I left work Oct 2019 to focus on a new coaching business but also mainly to focus on TTC (trying to conceive) again. We had a lot of mainstream and holistic treatments such as cupping, acupuncture and IVF planned for 2020. 2020 had other plans so we have done very little. We will try again when we can.
For me, being a Muslim meant I never went through the ‘why me?’ stage because of my trust in God. My faith gave me a sense of understanding and a reminder that this short time on earth is at times painful but we will be OK. On the other side, there is definitely pressure you feel as a Muslim woman to have children. Cultural Muslim communities can at times only validate a marriage by the children marriage produces.
I feel my faith gave me strength but people from the faith often see women through the lens of a wife and mother. This can damage a woman’s self-worth and identity. I consciously decided against this narrative very early on.
One thing I saw early on in this journey of TTC is that there is very little support, communication or understanding of infertility in the Muslim community. While I get the support I need from those I know and love this isn’t true for others. One way I have tried to fill this void is by writing a book aimed at Muslim women facing infertility with the clear message of the need to take control. It shall be out in 2021.
Although the main part of my fertility journey started after I got married, it was always there in the background long before. I always had irregular periods and was tested twice for PCOS, but because it doesn’t always come up on blood tests the doctors deemed me fine. But my sister was diagnosed with it when she was a teenager so it was always at the back of my mind.
When I got married I decided to come off the pill after six months because of how I personally feel it affects your fertility. And we were lucky enough to get pregnant after about 10 months. But I kept having issues in my pregnancy. I was on medication for diabetes among other things and the doctors didn’t take me off them until I asked them to. And, at my last midwife appointment they had me referred to a specialist team because the medication I’d been on could cause abnormalities.
At 13 weeks I started bleeding and the hospital treated me terribly. At first they thought I was a foolish first-time mum and I had to go into A&E three times with awful cramps and bleedings before I was finally referred for a scan and we could confirm I’d had a miscarriage.
It was a life-changing experience, and from then on I saw there was a lack of any sort of support within the Muslim community and more specifically within the Southeast Asian community where I come from. That’s when I started to speak to women like Sama who have gone through similar things or are facing infertility themselves.
We couldn’t find the support and space to talk for Muslim women at all. For women of any colour it is just such a taboo to talk about. Considering we’ve had people turn around and say all the nastiest things you could think of, we knew there needed to be a place that would actually come up if you’re googling ‘Muslim miscarriage’ or ‘Muslim infertility’. And a place where women could talk without feeling judged.
When I had my miscarriage I was told not to talk about it and that I wasn’t allowed to cry about it in front of other women. I obviously was not in the best mental health space then. My face would look as though I had been crying and people would ask me what happened but there were women in my own generation who told me that I was not allowed to talk about it. There was no acknowledgement of my bereavement or the loss of my child. And if you’re struggling with infertility it is shameful and it is immediately blamed on the woman. I hate the fact that it’s just ‘one of those things’ because it shouldn’t be. There’s so many taboos within the Muslim community that I wish people would talk about more. Unfortunately, infertility and child loss is one of those things. It’s not been an easy ride to have your own family turn around and tell you to have patience while disregarding the fact you’ve already had a child.
It’s not that it’s been so long I’m over it, I still grieve on and off, but I detach myself and take a very matter-of-fact approach to all this now because it’s easier for me to cope. I couldn’t talk to the women on Instagram and Facebook if I was constantly emotionally attached because it would damage my mental health. I have to be distanced from my own experience to listen to others.
If you’re trying to conceive or dealing with miscarriage you can call the Fertility Network UK‘s support line on 0121 323 5025
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