‘We’re losing decades of our life to this illness’: Long Covid patients on the fear of being forgotten

On 20 March 2020, Rowan Brown started to feel a tickle at the back of her throat. Over the next few days, new symptoms began to emerge: difficulty breathing, some tiredness. By the following week, the UK had been put under lockdown in a last-minute attempt to contain the spread of SARS-CoV-2, or Covid-19. 

Brown didn’t know then she was at the beginning of a condition that did not yet have a name, but which has since become known as Long Covid. After two weeks, she had a Zoom with a friend, and at the end of the conversation it was as if all life force had drained out of her body. Her doctor advised her to stay in bed for two weeks. Those two weeks turned into three and a half months of extended Covid symptoms: nausea, fevers, night sweats, intense muscle and joint pain, allodynia (a heightened sensitivity to pain), hallucinations, visual disturbances. By the end of the three months, she had noted 32 different symptoms. “I didn’t recognise the way my body felt at all: my skin, my hair,” she remembers now. “It was like being taken over by a weird alien virus, which I guess is what happened.”

Brown, 48, is one of 2 million people in the UK thought to be experiencing long Covid symptoms; according to a study published last summer, roughly 400 million people worldwide have been affected. Often, long Covid patients experience mild primary infections, are never admitted to hospital and only realise there is a problem later, when the symptoms persist well beyond the usual two weeks. Some make a full recovery, some see improvements over time; others, like Brown, have seen little progress since being infected five years ago.

One of the main challenges in diagnosing and treating long Covid is its unpredictability: research studies have linked it to more than 200 symptoms affecting every part of the body. Many patients go on to develop complications such as postural orthostatic tachycardia syndrome (POTS) and fibromyalgia, a chronic pain disorder; 59% of patients show signs of organ damage. 

The unwillingness to discuss chronic illness is especially concerning when combined with the scepticism faced by Long Covid patients, who have to advocate for themselves so that medical professionals, employers and loved ones understand the gravity of their illness.

All of this conspires to make Long Covid patients feel invisible, voiceless and forgotten. 

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Source: The Guardian, 2 March 2025

Further reading on the hub:

• Exploring the barriers that impact access to NHS care for people with ME and Long Covid
• Building an NHS that’s there for Long Covid and ME
• Top picks: 12 research papers on Long Covid
• It's time to confront Long Covid: An interview with Clare Rayner on why we must keep pushing for research, treatment and prevention
• Healthcare workers with Long Covid: Group litigation – a blog from David Osborn