Long-term COVID patients are pressured to prove that their disease is real

People living with long-term COVID often feel rejected, lacking trust and support from their healthcare providers, according to a new study from the University of Surrey.

The study, published in the Journal of Health Psychology, examined how patients with long-term COVID feel about their illness. The study found that many patients believe they have to prove that their illness is physical in order to be taken seriously, and as a result often reject psychological support, fearing it implies that their symptoms are “only in their head.”

“We have found that the problem is not that people with long-term COVID refuse help, but a deep need to be trusted. When a patient feels rejected, offering psychological support instead of medical care can be misinterpreted as an offense,” said researcher Jane Ogden, professor of health psychology.

According to the Office for National Statistics, there are 1.9 million people living with long-term COVID in the UK. Symptoms of long-term COVID include fatigue, difficulty concentrating, muscle aches and shortness of breath that persist for many weeks, and sometimes months, after the initial COVID-19 infection.

The symptoms of long-term Covid are quite varied, with the most common being fatigue, cognitive difficulties, shortness of breath, and muscle pain (Office for National Statistics [ONS], 2023); The National Institute for Health and Care Excellence [NICE], 2022). Although there is still no internationally accepted definition of long term Covid disease, NICE guidelines suggest that acute Covid infection progresses to long term Covid disease when symptoms persist for 4 weeks after infection (NICE, 2022). Specifically, symptoms that persist from 4 to 12 weeks after onset can be categorized as “ongoing Covid-19 symptoms,” and symptoms that persist for 12 weeks are known as post-Covid-19 syndrome (NICE, 2022).

The Surrey study conducted in-depth interviews with 14 UK residents aged 27 to 63 who had experienced COVID symptoms for more than four weeks. The group included 12 women and two men.

“We found that our participants were living in constant uncertainty while trying to find a treatment. People told us they didn’t feel listened to or heard, some said they had lost trust in their doctors, their social circle and even their own bodies because of their experiences. Medical advice is essential, but psychological support should be offered with caution. If it is seen as a substitute for medical care, it can seem abusive,” adds Saara Petker, a clinical psychologist, co-author of the study and former PhD student at the University of Surrey.

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Published: 27.03.2025

Updated: 26.03.2025

Medical author, Medical editor:

Stepan Yuk

Medical expert:

PhD. Olexandr Voznyak