Eating disorder recovery, fertility treatment, hearing loss and COVID: Emma’s story

Content warning: 

This article discusses Emma’s Body Mass Index (BMI) in the context of her fertility treatment, as patients are required to maintain a BMI of 19 or above to qualify for NHS fertility treatment. We recognise that BMI is a controversial subject in the context of disordered eating. The article also discusses anorexia, eating disorder recovery, infertility, baby loss and pregnancy.

If you require eating disorder support, please feel free to reach out to BEAT charity. If you need support or guidance around pregnancy complications, miscarriage, stillbirth, premature birth and neonatal death, you can reach out to Tommy’s charity. You can also review the South West Leadership Academy Wellbeing Pack which includes the NHS Bereavement Support Line.

Written by Emma Mendes da Costa (she/her)

Inclusion Project Lead

Disability and Wellbeing Network Chair

Sussex Community NHS Foundation Trust

When my partner and I saw in the New Year together, after oddly muted Tier 4 Christmas celebrations, we had no idea just how much our lives were going to change over the coming months. After consultation with our fertility clinic throughout December, we had agreed to start my third round of in vitro fertilisation (IVF) treatment – our sixth round of fertility treatment in all – on 1 January 2021, so our fridge was packed with a rather unappetising mixture of festive leftovers and chilled hormone injections.

With a third national lockdown looking increasingly likely, we weren’t entirely sure that the clinic would even be reopening after their Christmas break. Still, we started the cycle as planned, and geared ourselves up for the now-familiar schedule of injections, blood tests, internal ultrasounds and shifting appointments.

It had been a long journey already, starting back in 2017 when, after 20 years of disordered eating, I stopped taking the pill and started eating disorder recovery to improve my mental health and maintain a healthy weight. Both my partner and my Trust were incredibly supportive of my recovery journey, and I went from 38.4kg, a BMI of 15.5, to around 47-48kg, a BMI of 18-19, in the space of a few months. I was happier with my weight and my body than I had been in my entire adult life, but unfortunately my periods never returned.

My partner and I began fertility investigations in 2018, and went through a comprehensive barrage of checks, tests and consultations before finally qualifying for NHS fertility treatment at our local private clinic in September 2019. We started with ovulation induction – a sort of IVF-lite where I took hormones in an attempt to stimulate my ovaries – but after three rounds we still hadn’t achieved the correct balance of medication, and it was agreed in early 2020 that IVF would be our next step.

Of course, the first lockdown started in March 2020, and our fertility clinic closed abruptly, and for the foreseeable future, while the world got to grips with the emerging pandemic. It was heartbreaking finally being given the go-ahead for IVF only to have treatment suspended indefinitely, especially as fertility issues are so time-sensitive and it felt like time was ticking away from us. Still, we did our best to focus on the positives; we had each other, our jobs were secure, and we were top of the list as soon as the clinic could reopen.

I had weekly check-ins with my line managers throughout this time, which were utterly invaluable as I was able to share my experiences and feelings in a safe space, without judgement. I honestly don’t know how I could have coped without the support and flexibility I was given when it came to appointments, or without working in an environment where I could talk openly about hormones, mood swings, and other delightful side-effects and symptoms. I shared a lot of my story on social media too, and several of my Trust colleagues reached out to me with their own experiences of fertility treatment, which was really thoughtful and kind, and always very much appreciated.

When the clinic reopened in August they had to put a lot of new restrictions and COVID-secure measures in place, including mask-wearing at all times for both staff and patients, which added pressure for us as I’m deaf and reliant on lip-reading. My partner had to attend all my appointments with me to facilitate communication, and we all muddled through together using a combination of clear face shields and basic British Sign Language (BSL).

At this point, my mental health was declining; with face-coverings suddenly everywhere it was a bad time to be deaf, and I felt like I’d lost a lot of my independence as I needed support with basics like shopping for the first time. After our first IVF cycle failed, and the second was abandoned due to health concerns, I realised that I didn’t even have the language to properly describe what was happening to me. Although everyone at work continued to be supportive of my needs, no one had enough specialist knowledge and experience to advise me about the loss I was feeling.

So when the third cycle rolled around in January, our last available treatment on the NHS, I wasn’t feeling particularly hopeful, even when the clinic reopened. I felt like I could write an entire book about being deaf and going through fertility treatment in the midst of a pandemic, and after the third national lockdown started on 6 January I felt even more isolated than ever, like my entire world had been reduced to our flat, the fertility clinic, and the ten minute walk between them.

I realised that I needed external support, and self-referred myself to the newly-launched Staff in Mind service run by Sussex Partnership NHS Foundation Trust. Staff in Mind supports health and care staff in Sussex by providing independent and confidential mental wellbeing assessments, along with priority access to treatment, and they began the process of setting me up with talking therapy with the Brighton and Hove Wellbeing Service.

In the meantime my partner and I continued with the cycle; daily injections to stimulate my ovaries, and clinic appointments every two days to monitor my progress, then egg collection under general anaesthetic, embryo implantation five days later, and a final ten-day wait before we could take the first home pregnancy test on 29 January.

I was completely convinced that the cycle hadn’t worked, so even when the first pregnancy test was positive I had to take another two before I dared to show my partner. Those three blue crosses were our first real chance in four years, the first indication that my deaf-pandemic-IVF book could have a happy ending.

As I sit here typing this now I am seven and a half months pregnant, with my wriggly baby bump making it increasingly difficult to reach my laptop keyboard. A lot of what we went through to get to this stage now seems like a surreal and distant dream, but I’ve been taking the time to reflect upon how lucky I’ve been to have the full support of my Trust throughout my eating disorder recovery, our fertility journey, and now my pregnancy. I’ve been given safe spaces to talk, the flexibility and trust to navigate appointments, mood swings and fluctuating energy levels on my own terms, and access to mental health and wellbeing services that helped me get through a tricky and anxiety-filled first trimester.

If I could go back in time, there’s only one thing I’d change, and that would be giving my line managers, and other colleagues who wanted to support me, more specialist knowledge and training about fertility treatments, baby loss, and IVF pregnancies. Fertility treatment is becoming increasingly common, but everyone’s experiences and journeys are different, and there are a lot of misconceptions out there about the multitude of processes involved. For the most part, I was able to explain myself and my needs to my colleagues as I went along, but some days I found rehashing upsetting experiences emotionally exhausting, and it would have been amazing to have someone who truly understood to talk me through everything.

Now that my partner and I finally have the luxury of looking forwards, we talk a lot about parenting, and how we will raise our child in a post-COVID world. I’ve decided to only take a short maternity leave, not because I feel any pressure from my Trust to return, but because I love my job and we have excellent workplace nurseries on our sites. The nursery staff all use Makaton, which is important to us as we don’t know yet whether they’ll be deaf like me, and if they are I never want them to feel disadvantaged or excluded. Above all, I want them to feel loved, and complete just as they are.