People living with Long Covid have faced years lack of recognition and misunderstanding. Behind every statistic are real people, stories of loss, resilience, creativity and adaptation.
Long Covid Stories is a new project from Long Covid Support that aims to share some of these experiences with a wider audience.
Through a series of written pieces, the project will highlight the many different realities of living with Long Covid. These stories will explore the personal, social and practical impacts of the condition, and the ways people continue to shape their lives around it.
The project is led by Matt Alton, who is interviewing members of our community and writing up their stories for our website and newsletter.
We’re honoured to share Naomi’s story. Written by Matt, it reflects on illness, care and the meaning of interdependence, showing both the losses Long Covid can bring and the creativity and connection that can grow alongside it.
Naomi’s Story: not dependence, but interdependence
When Naomi developed Long Covid in 2020, aged 27, she was working three jobs: for an LGBTQIA+ charity, at a library, and as a copyeditor. She would go out on a week night and dance for five hours, absolutely sober. She did Yoga, weight training, rollerskating and an array of other sport and exercise. Naomi suspects she may have caught Covid-19 after visiting York in February 2020, the location of the UK’s first case. A confirmed infection in April led to Long Covid, with so many symptoms she finds it easier to name the ones she has not dealt with. Some of the most debilitating, and damaging to her self-worth, have been severely impaired lung function, chronic fatigue, and cognitive dysfunction that led her to forget an acquired language.
As Naomi tried to recover from the after-effects of Covid-19 in the spring and summer of 2020, she faced a complete lack of NHS guidance. After following GP advice that all she needed was rest, her health continued to decline. She returned to the doctor armed with the findings of self-directed research, requesting a batch of tests which resulted in a Long Covid diagnosis. Since then, she has struggled to coordinate between various arms of the NHS who fail to communicate with each other, or to fully recognise the multi-system nature of Long Covid. Naomi recently noticed ‘Long Covid’ being removed from the names of some NHS services, and from their webpages entirely, amounting to an erasure of the myriad people who live with the illness.
Living with Long Covid has led to the end of friendships, including people who had been in Naomi’s life for 20 years. There are those who saw her during periods of better health and refused to believe she was unwell. One friend advocated for ‘positive mindset’, which amounted to blaming Naomi for her continuing illness. She’s been particularly disappointed by some friends who claimed to be anti-ableist and anti-oppression, but ended up being among the least empathetic.
Naomi’s need for care, such as assistance with bathing, being brought food, and encouraged out of bed, has required her to be vulnerable with the people who have stayed in her life. This has deepened the intimacy of those relationships. Friends have been keen to underline that their relationship isn’t one of dependence, but of interdependence. Like many chronically ill people, Naomi has become an expert in her illness, to the extent that she feels as though she has a PhD in Long Covid. She has become the go-to among her friends for advice on diet and the kinds of supplements that can be beneficial. Naomi can also take the weight off others by offering help with computer based research, such as house hunting.
Heightened emotion – including stress and happiness – exacerbates Naomi’s dysautonomia, which makes all of her symptoms worse. Because of this, Naomi has a lot of practice turning her physical space into a cave of calm. Once, when housesitting, she had softened the lighting, used extra cushions to create places to sit on the floor, and burned incense; when her friend returned they realised that Naomi’s adjustments fulfilled their own needs for a peaceful space in ways they would have never thought to action.
Naomi enriches the world around her in creative ways: through the interdependence she’s built in her relationships, sharing how she manages her illness, house sitting, and her Long Covid advocacy and activism on Instagram at @longcovidrecoveryschool. Each of these is a small challenge to any person who thinks that people with chronic illnesses like Long Covid do nothing but take.