Experiencing long Covid comes with lots of uncertainty from peers and medical professionals. (© Dzmitry – stock.adobe.com)
In a nutshell
- Long Covid patients often reject psychological explanations not out of denial, but because they’ve felt dismissed, disbelieved, and invalidated by healthcare providers.
- Many patients actively seek biological evidence for their symptoms to prove their illness is real, creating tension with doctors who offer psychological support without first acknowledging physical suffering.
- When patients feel heard and believed, they become more open to psychological tools—not as a cure, but as a way to cope with uncertainty, identity disruption, and the daily challenges of Long Covid.
GUILFORD, England — The pandemic may have faded from headlines, but its aftermath lingers in the bodies and lives of millions worldwide battling long Covid. For these individuals, symptoms don’t resolve after a few weeks but stretch into months or years, creating a mysterious condition that challenges both medical understanding and patient-provider relationships.
A new study published in the Journal of Health Psychology digs into a thorny issue: Why are some patients wary of mental health-based treatments for long Covid? Researchers from the University of Surrey discovered this resistance isn’t mere stubbornness; it stems from patients feeling dismissed and delegitimized by healthcare systems when psychological factors enter the conversation.
While healthcare professionals increasingly view long Covid through a biopsychosocial lens (considering biological, psychological, and social factors together), many patients firmly push back against including psychological elements in their care. This tension creates barriers to effective treatment for countless sufferers worldwide.
The Birth and Impact of Long Covid
Long Covid emerged organically from patient communities online, where people connected over persistent symptoms when medical establishments had few answers. The condition encompasses numerous complaints, such as extensive fatigue, cognitive fog, breathlessness, and muscle pain rank among the most common. Currently, no single definition exists globally, though UK guidelines consider symptoms lasting beyond four weeks post-infection as the transition from acute COVID to long Covid.
Demographics show the condition hits certain groups harder: women, older individuals, white ethnicities, and those with poorer pre-pandemic health report higher rates. Interestingly, long Covid can strike regardless of how severe the initial infection was, complicating the search for causes.
Scientists have proposed various theories like ongoing inflammation, lingering virus particles, or reinfection with different strains, but these theories remain unconfirmed. This uncertainty creates friction between patients and healthcare providers. Many long Covid sufferers describe the frustrating cycle of seeking medical help only to find test results showing no clear physical problems. When doctors then suggest psychological factors might be involved, patients often experience this as invalidating or dismissive of their very real suffering.
Living in Uncertainty and Broken Trust
The study team interviewed fourteen UK participants with either self-reported or medically diagnosed long Covid. Three major themes surfaced in their conversations: “Living in uncertainty,” “Why should I trust you if you don’t believe me?” and “Once I know the cause people will believe me.”
Living with long Covid means navigating constant unknowns. Participants described fear about their future health, frustration at limited treatment options, and profound identity disruption.
Treatment options vary wildly depending on location and available expertise. Emma, a study participant, described being dismissed by doctors in her area based on not having certain symptoms. Others found that even when they qualified for specialized services, options were inadequate or wait times excessive.
The identity disruption cut deepest for many. A study participant named Sameera said she felt like a different person than she was before experiencing long Covid. Another patient, Poppy, described feeling estranged from herself.
There seemed to be a broken foundation of trust that spilled over into personal lives as well. Participants described losing faith in doctors who couldn’t provide answers, friends and family who couldn’t grasp their invisible illness, employers expressing disbelief in their condition, and even their own unpredictable bodies.
“The fact that experts don’t really know what’s going on, the fact that I don’t feel I was listened to, that had a profound effect on how I coped with it,” says one study participant named Sarah. She noted that simply being listened to and given some direction, even with acknowledged uncertainty, would have helped her manage her condition better.
From Resistance to Integration
Participants actively sought biological validation. They described educating themselves through research, focusing on physical causes, and pushing back against psychological explanations. A lack of support from doctors left some participants feeling like they were left to their own devices.
This hunt for medical validation led many to explicitly reject psychological factors. Participant sentiments revealed an unmistakable tension between two types of expertise: medical knowledge and lived experience. Some long Covid sufferers ended up coming to terms with accepting psychological help, which did show improvement in symptoms for some people.
Building Better Care Through Trust
When long Covid patients feel their physical symptoms are acknowledged and believed, they become more receptive to psychological approaches that help them cope. Their resistance isn’t about rejecting mental factors entirely; it’s about fearing that psychological explanations will replace medical validation of their suffering.
For the millions battling long Covid globally, recovery involves rebuilding trust in healthcare providers who believe their symptoms, friends and family who support them despite the invisibility of their condition, and their own bodies as they navigate this uncertain territory. Patients must feel heard and believed before they can engage with psychological support. When patients feel seen, psychology can become a partner rather than a threat in their healing journey.
Paper Summary
Methodology
The researchers conducted semi-structured interviews with fourteen UK residents (12 women, 2 men) aged 27-63 who had self-reported or diagnosed Long Covid. Interviews lasted 25-35 minutes and explored experiences with Long Covid, its impact, theories about symptom persistence, coping strategies, recovery perspectives, and views on psychological factors in illness. Data was analyzed using reflexive thematic analysis, an approach that identifies patterns across participants’ responses to develop meaningful themes.
Results
Analysis revealed three key themes: “Living in uncertainty” (fear about the future, frustration with limited treatments, disrupted identity), “Why should I trust you if you don’t believe me?” (broken trust with healthcare providers, social circles, and their own bodies), and “Once I know the cause, people will believe me” (seeking physical validation while rejecting psychological explanations). Transcending these themes was tension between medical expertise and lived experience. An overarching resolution emerged where some participants began accepting psychological approaches for symptom management while still seeking medical validation.
Limitations
The study faces several constraints: participants self-reported their Long Covid diagnosis, often without confirmed COVID-19 tests; the predominantly white, female sample may not represent all Long Covid experiences; and both researchers were psychologists, potentially attracting participants more open to psychological perspectives or creating pressure for socially desirable responses. The timing of the study (April 2022-March 2023) may also mean the sample differs from those receiving formal diagnoses today.
Discussion and Takeaways
The findings point to practical improvements for Long Covid care: healthcare providers should acknowledge uncertainties rather than dismissing unexplained symptoms, work collaboratively with patients as experts in their own experience, and help educate support networks. Psychological support works best alongside—not instead of—medical investigation, focusing on managing uncertainty, rebuilding identity, and understanding mind-body connections. This integrated approach could help move beyond the harmful suggestion that symptoms are “just in your head.”
Funding and Disclosures
The authors received no financial support for this research and declared no conflicts of interest. The University Ethics Committee (FHMS 21-22 282 EGA) approved the study on November 1, 2022, and all participants provided written consent.
Publication Information
The study, “Patients’ experiences of living with Long Covid and their beliefs about the role of psychology in their condition,” was authored by Saara Petker and Jane Ogden (University of Surrey) and published in the Journal of Health Psychology in 2025.
