Sad woman
Sad woman
Millions of people suffering from Long Covid are caught in a frustrating cycle of trying to prove their illness is real while navigating a healthcare system that often leaves them feeling dismissed and disbelieved, according to groundbreaking new research.
The study, published March 17 in the Journal of Health Psychology, reveals how patients with persistent symptoms months after initial COVID-19 infection find themselves trapped between medical uncertainty and psychological support they fear implies their condition isn’t physical.
“We found that the problem isn’t people with Long Covid refusing help – it’s about the deep need for people to be believed. When a patient feels dismissed, offering psychological support instead of medical care can be misconstrued as insulting,” explained Professor Jane Ogden, co-author of the study from the University of Surrey.
Research participants described a harrowing journey through medical skepticism that forced them to become their own advocates, often spending countless hours researching medical literature in hopes of finding evidence that would validate their suffering.
One participant, Emma, captured the sentiment shared by many: “I have taken what they [medical professionals] are saying to me as them saying ‘this is all in your head’ and I felt terrible about that and invalidated and like I’m doing something wrong and it’s my fault.”
The study, which involved in-depth interviews with 14 UK residents aged 27 to 63 experiencing Long Covid symptoms, identified three major themes: living with uncertainty, broken trust, and the desperate search for medical proof.
Nearly two million people in the UK currently live with Long Covid according to the Office for National Statistics, experiencing symptoms like debilitating fatigue, cognitive difficulties, and muscle pain that persist weeks or months after their initial infection.
Many participants described how the invisible nature of their symptoms compounded their difficulties. Louise explained how this affected relationships with her employer: “Occupational health did not know a thing, and weren’t really believing me, my employer definitely wasn’t, friends are getting it a bit more now but don’t really get it because they see you on good days.”
The research revealed a troubling pattern where patients, feeling dismissed by healthcare providers, turn to self-education through medical research to find physical explanations for their symptoms. This often leads to rejecting psychological support for fear it suggests their illness isn’t “real.”
Saara Petker, clinical psychologist and co-author of the study, noted: “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.”
Many participants described a profound identity crisis as they struggled to reconcile who they were before Long Covid with their current limitations. Poppy, one of the study participants, shared her experience: “Mentally [I’m] very down. Sometimes very, very weepy, very weak just because it’s not me. I know it’s not me… You know where I used to make lunch and supper, I can just make supper now.”
The researchers found that the healthcare system’s traditional separation between physical and psychological care creates a false dichotomy that ultimately harms patients. This division forces people with Long Covid to feel they must choose between seeking physical treatment or psychological support, when most need both.
“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 emphasized.
Some participants eventually found a middle ground, accepting that while their condition has physical origins, psychological support could help them cope with the challenges of living with a chronic illness. This represented a crucial shift from asking “what’s the cause?” to “how do I cope?”
As Nicole, a study participant, explained: “Now I’ve come to terms with well, it’s just happened, we are where we are… improvements physically have happened because I have changed my mindset on it I think.”
The researchers recommend healthcare providers acknowledge uncertainty about Long Covid’s causes rather than dismissing symptoms, validate patients’ lived experiences, and offer psychological support alongside—not instead of—medical care.
For the millions struggling with this debilitating condition, the study offers hope that better understanding could lead to more compassionate care that bridges the artificial divide between mind and body, treating the whole person rather than just a set of symptoms.
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