"Let’s put it this way, before COVID my summer holiday plans were to hike across the Brecon Beacons," says Sasha with a little laugh. Now, though, they struggle to breathe doing far less. They're in the midst of describing how it feels to stop partway through sex because you can’t catch your breath. "It’s happened to me at points when I’m getting very close to climaxing and I’ve had to say 'No, I’ve got to stop. I can’t breathe.'"
Having become unwell last March with COVID, the 33-year-old, who is non-binary (AMAB), has suffered from long-term effects of coronavirus ever since, with symptoms such as chronic fatigue, breathlessness and chest pain becoming constant companions. Once able to cycle long distances and a fan of bouldering and rock climbing, Sasha now struggles to go to the local shops unaided. "I have very little energy a lot of the time," they explain. "I can’t stand for long periods of time and if I do go out for a short walk in the day, I’ve started using a walking stick – partly so I have something to lean on if my energy drops but also as a visual aid for people to give me a bit more space."
Post COVID-19 syndrome, or 'long COVID' as it’s often referred to, is a looming issue for healthcare. As many as one in 20 people who test positive for COVID-19 are likely to suffer from long COVID, according to a King’s College London symptom tracking study. The continuation of the pandemic could potentially add up to hundreds of thousands of sufferers in the UK, and millions worldwide.
Confusingly, the chance of having long-term symptoms doesn’t seem to be linked to how ill a person is when they first get coronavirus, says the NHS. In fact, there are many unknowns when it comes to long COVID, with some experts highlighting an urgent need for more research into what they believe could present a "significant health burden worldwide".
Our sex and breathlessness leaflets have been flying off the shelves in the post-COVID clinic.
Rosie, respiratory nurse
Rosie*, a 25-year-old respiratory nurse at a central London hospital, has seen the effects of long COVID firsthand through her work last summer in post-COVID clinics. "We had lots of people referred to us who’ve come in and they’re really breathless and fatigued, months after having had COVID symptoms," she describes. "They get breathless on exertion and people forget that exertion isn’t just going for a walk or climbing up stairs. It involves sexual health as well: masturbation or sex with your partner." She shares a fascinating insight: "Our sex and breathlessness leaflets have been flying off the shelves in the post-COVID clinic." Having noticed the popularity of the British Lung Foundation’s sex and breathlessness leaflet, Rosie and her colleagues made sure to address the topic with patients and nudged consultants to do the same.
"It’s not something that is often talked about, or at the forefront of people’s minds, but it is incredibly important," she stresses, describing how long COVID symptoms such as fatigue, breathlessness and hair loss combine with trauma and the scars (literal and mental) of recovering from the illness to create a real change in an individual’s confidence and body image. "They’re all included in a person’s sexual health, body image and how sexy they feel."
Jennifer, a mother of one from Yorkshire, can relate. Both she and her husband caught COVID-19 at the start of the first lockdown but while her husband recovered quickly, a few months later Jennifer started to suffer from long COVID symptoms. "It comes out of nowhere and takes a hold of you. Sometimes I become light-headed from getting breathless walking up the stairs. I’ve only felt fatigue like it once in my life and that was after being awake 40 hours following childbirth."
What has really upset her, though, is the effect it has had on her relationship with her husband, emotionally and sexually. "We didn’t have the most consistent sex life pre-COVID, although I did feel we were a lot happier than we had been in a while, before the pandemic hit." Since falling ill last year, she confides that they’ve only had sex once. "It was completely different for me," she says openly. "Of course, I tried not to show it, but I felt breathless at times and super fatigued after." She describes feeling as if she’d done a major workout. I ask if she feels like the symptoms have held her back from having sex since? "Yes. I think about the fact that we’re not doing it and the effect it’s having on our relationship probably every day."
"The symptoms are holding me back physically, yes, but I just don’t feel attractive anymore, not in a sexual way anyway," she says, explaining how hair loss has knocked her confidence while the fatigue, breathlessness and joint pain she experiences makes her feel three times older than she is.
Another long COVID sufferer Sarah*, has also seen her relationship affected. Having had COVID more than 11 months ago, the 35-year-old says she still experiences frequent chest and muscle pain and is frustrated at how it's led to limitations when it comes to intimacy with her husband. Whilst, pre-COVID they were having sex twice a week, that's now dropped to once every couple of months. Plainly put, she says: "Mentally I want to have sex with my husband, but physically it's not possible, because after sex my body and chest pain get worse."
Breathlessness is certainly a big issue when it comes to the effects of long COVID. Jessica Kirby, head of health advice at the British Lung Foundation, agrees: "We’ve heard from many people struggling with breathlessness after having COVID. Last year, more than 50,000 people visited our website to get advice on sex and breathlessness, an increase from 2019, so it’s clearly an issue people are worried about."
I think about the fact that we're not doing it and the effect it's having on our relationship probably every day.
While that figure will also include those suffering from other respiratory illnesses and long-term conditions such as asthma or COPD (chronic obstructive pulmonary disease), the increase does show – whether it’s COVID-related or not – that a greater number of people are seeking advice for this issue. So what adjustments can you make if you’re suffering from breathlessness when you get down to it?
Kirby stresses that breathlessness needn’t get in the way of sex and relationships. "If you start to feel breathless during sex, try slowing down or taking a rest. If you have been prescribed a reliever inhaler, stop to take it if you need to." She advises building in frequent rests, changing positions or taking turns with sexual activity.
Another thing the sex and breathlessness leaflet addresses is positions. Some will help reduce breathlessness, for example, lying on your side with your partner, either facing each other or with one partner behind the other. "The key is to avoid positions that put pressure on the chest," explains Kirby. "Positions that use less energy to maintain may be more comfortable and you could also try using pillows to maximise your comfort."
From tips on how to choose a good time to have sex to ways to manage symptoms before you get started, the BLF leaflet also features several examples of positions to try (handily illustrated) and ways to frame a conversation with a partner or when seeking advice from a GP.
We may have become more sexually liberated in recent years but there’s still a very real stigma when it comes to discussing the subject. "No one initially talks about it because they’ve put it really far down on a list of priorities," says Rosie. "But sex is a massive thing when it comes to quality of life...I guess young people, especially, take it for granted that they’ll comfortably be able to have sex."
Sasha, meanwhile, is having to relearn sex. "It’s definitely had a major effect on my mental health and it’s quite distressing at times," they say. "I have a pre-sex routine: there’s a lot more psychological and physical prep now before I engage in sexual conduct. It’s an interesting new way of thinking."
*Name has been changed