Long COVID Patients Say They Still Struggle To Convince Medics Their Illness Is Real

“We found that our participants are living a life of constant uncertainty, struggling to find treatment. People told us that they didn’t feel listened to, some said they’d lost trust in doctors, their social circles and even their own bodies because of the whole experience,” said clinical psychologist Saara Petker, co-author of the study, in a statement.

“Medical advice is crucial – but psychological support must be offered with care. If it’s seen as replacing medical help, it can feel dismissive.”

Petker and co-author Professor Jane Ogden of the University of Surrey interviewed 14 UK-based adults with long COVID. The participants were not required to have received a formal diagnosis and could instead self-report their symptoms; long COVID was defined as symptoms of COVID-19 lasting longer than a 4-week period of initial infection.

It was through self-reporting and finding other people with similar experiences online that long COVID initially came to be recognized as a phenomenon. During the early weeks of the pandemic, people who had recovered from COVID – often with fairly mild symptoms – began to notice that they were not getting better as expected.

Lingering issues included debilitating fatigue, brain fog, shortness of breath, and dizziness, but it varied a lot between people. Recent research has now defined over 200 possible symptoms that may be associated with long COVID, but at the time the first cases started to emerge, the medical establishment still knew very little about COVID at all.

Over time, long COVID became a recognized phenomenon that medical researchers started to investigate. But years later, the participants in Petker and Ogden’s research detailed their continued struggle to feel heard and believed by clinicians.

The interviews took place between April 2022 and March 2023. From analysis of the transcripts, the authors saw three main themes emerging:

1. Living in uncertainty
2. Why should I trust you if you don’t believe me?
3. Once I know the cause people will believe me

The participants discussed their lack of hope for a treatment for their symptoms. One spoke of how she was dismissed by specialist long COVID medical services, while another felt her treatment from these services had been inadequate.

“Participants felt pressured into adopting a medical position to explain their long COVID illness,” the authors write, “as this seemed to be the only way to persuade others to believe their condition.” This meant conducting their own research and trying to make sense of symptoms on their own, only to feel that this research was being disregarded by clinicians.

Because they felt the physical aspects of their condition were not being taken seriously, several participants described a reluctance to engage with psychological therapies or to take antidepressant drugs they had been offered, despite the fact these can be beneficial to people living with chronic physical illnesses.

One participant “described a rejection of the idea that her symptoms are ‘psychological’ in aetiology and likened this idea to being told that her illness is all in the mind or ‘mental’.”

“We found that the problem isn’t people with long COVID refusing help – it’s about the deep need for people to be believed,” said Ogden.

The study concluded that if healthcare workers take steps to ensure patients with long COVID feel heard, and offer psychological therapies as an addition to other medical treatments and investigations, patient trust can be preserved and the patients themselves may feel more able to engage with a combination of treatment options.

“When a patient feels dismissed,” Ogden concluded, “offering psychological support instead of medical care can be misconstrued as insulting.”

The study is published in the Journal of Health Psychology.