‘The stakes feel horribly high’: The fear and isolation of IVF during Covid

During the summer of 2021, as the UK opened up following months of strict lockdown, Finola Glacken-Smith and her husband continued to live their lives in near isolation, cancelling social plans and spending thousands of pounds on taxis in order to avoid public transport. Neither of them is classified as vulnerable, nor are they particularly scared of the virus itself. They are going through their eighth round of IVF, and catching Covid would mean having to abandon the cycle.

“To get to the final hurdle and have a positive PCR would just have been devastating, so we took the decision to only see family outside, not to hug anyone... we didn’t go inside a shop or a pub or restaurant for about 18 months. We have missed out on so much – especially with family and friends,” says the 35-year-old from east London, who had her second embryo transfer cancelled in March 2020, two days before the procedure was due to go ahead.

“It was absolutely devastating, and we had no idea when elective medical procedures were going to start up again,” she says. “My experience of the pandemic has basically been worrying when treatment is going to start again, and worrying that I’m going to catch Covid and lose our money and our cycle.”

The couple embarked on a new cycle of treatment in January 2021, just as the UK entered its third, and longest, lockdown. “My husband and I debated for a long time whether it was the right thing to do morally, as it was an elective treatment; but I was almost 35, we had three failed transfers behind us, and waiting until spring seemed an unbearably long time,” she says.

But doing so meant entering into a new period of isolation, and the couple struggled. “When you are going through something like IVF you really need your support network around you – you need to be able to hug your mum when your latest round has failed, or get drunk and have a cry with your best friend. And I’ve really missed those interactions.”

IVF is an expensive and high-risk medical procedure with mixed success rates, and is rarely entered into lightly, while pregnancy itself is associated with a higher risk of complications and fatality in relation to Covid-19. On top of that, testing positive for coronavirus means that a cycle of IVF must be abandoned, making the whole process a high-stakes poker game while Covid is still in widespread transmission.

At the beginning of the pandemic, all elective treatments, including IVF, were cancelled, even those in private clinics, leaving couples who were part-way through the process in limbo. Many couples who had planned to travel abroad – because treatment is cheaper overseas, and often available to women in their 40s or even older, whereas in the UK, many clinics only treat women up to 40 – found their plans to start a family hamstrung by Covid travel restrictions.

Now fertility treatments have resumed both at home and abroad, but because of a lack of long-term evidence on the effect that infection with the virus might have on each part of the process, from egg-harvesting to the viability of an embryo, clinics are taking a low-risk approach. If either partner receives a positive PCR test, the process is cancelled.

But it isn’t possible for all women going through IVF to completely abandon normality. Even in the middle of the pandemic, Leonie Higgins simply couldn’t avoid other people. As a freelance choirmaster, her work meant that she was always surrounded by others – in schools, attending workshops, at performances. “I just had to keep my immune system as robust as possible and get on with it,” she says. “I wouldn’t have earned anything had I shielded, so that wasn’t an option. We just had to take as many precautions as we could and hope for the best. It was so stressful.”

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For the 39-year-old from Manchester, it made the decision to start IVF treatment while Covid was still spreading fraught with difficulty.

Higgins first started treatment with the NHS in November 2020. “We were terrified about exposure,” she explains. “It was our only NHS round, and they had told us at our appointment that if either of us caught Covid then the cycle would be cancelled, and there was no guarantee it would be rescheduled. We properly shielded for two weeks before we started. We didn’t know whether we were going to be able to afford to go private, so the stakes felt horribly high.”

Unfortunately, the first round of treatment was not successful. The couple have since undertaken two more rounds of IVF at private expense, with the second treatment still ongoing. The Covid risk is now not only of lost time and emotional upheaval, but of huge financial expense if a round is cancelled due to a positive PCR test. And the uncertainty is only amplified by living through a global health crisis at the same time.

“The thing that people say a lot – and I mean all the time – is some variation of ‘Once you stop stressing, that’s when it’ll happen,’ which makes me feel like the whole thing is my fault. I just think – how am I supposed to not be stressed? It would be pathological to not be a bit stressed by what’s going on in the world at the moment,” says Higgins.

The pandemic has had a profound impact on the mental health of women and their partners going through IVF. In her book Covid Babies, Amy Brown, professor of maternal and child public health at Swansea University, cites a study that examined the symptoms of anxiety and depression among fertility patients during the pandemic. She reports that “21 per cent of women and 13 per cent of men exhibited clinically significant levels of depression, and 24 per cent of women and 18 per cent of men exhibited clinically significant levels of anxiety”.

Many facing this conundrum – of never having needed support more, but being less able to reach it face to face – have sought support online instead, through IVF message boards or on Instagram. But according to fertility counsellor and therapist Sarah Jons, it can add to the pressure and anxiety felt at this difficult time.

Jons has seen a rise in women in her practice reporting feelings of sadness, hopelessness and inadequacy, which themselves lead to cases of depression. At the beginning of the pandemic, women feared the delays caused by clinic closures could mean that they missed their window of opportunity to take treatment at all, and later felt forced to live in isolation due to a fear of contracting Covid.

Jons advises women going through IVF to remove themselves from social media and spend time connecting with their partners and immediate family, whom they can see safely, and to spend more time outdoors. Finding a focus outside infertility and the pandemic is essential to protecting both physical and mental health – both of which can affect the success rates of IVF treatment.

“Don’t compare and contrast [with others online] and don’t worry about age,” she advises. “We know the more depressed the body is, the lower the chances of IVF success. The mind and body connection really matters.” She recommends women feeling trapped by their circumstances focus on meditation or yoga, or find other ways to reduce their physical stress levels.

For Jessica*, 40, from Bath, the saga of fertility treatment at a time of medical crisis has a happy ending. She is now in her second trimester, despite also having gone through treatment for thyroid cancer in the first year of the pandemic. Now she is pregnant, she reports that the early hurdles have been replaced by some benefits.

“It was very rare previously to work from home, so being able to do that actually made it much easier to fit in the short-notice appointments which are part of the IVF experience without people noticing, which I was grateful for,” she explains. She also feels more protected falling pregnant after being fully vaccinated against Covid.

Jessica’s baby will arrive in 2022, but for the thousands of other women still trying to find their own route to a successful pregnancy, the anxiety of the Covid era is taking its toll, with many still unvaccinated because they don’t want any other disruption to affect their chances of conception. “The conversations I see in IVF forums on social media really scare me when I read about people who are worried about being vaccinated,” she warns. “It’s striking and worrying how many people still aren’t confident in the [vaccination] programme.”

*Name changed to protect anonymity