The purpose of this sub-study was to better understand and explore individuals’ experiences with long COVID and commonly reported symptoms using qualitative data collected from open-ended survey items contained within a larger survey [8]. Findings support and extend prior research and underscore the complex, highly variable, and distressing nature of long COVID across a large number of participants from predominantly developed countries. Results also align with literature capturing the vexing experience of navigating an ‘invisible’ and poorly understood illness that disrupts nearly all aspects of daily living [24–27]. These findings contribute to a growing evidence base calling for continued efforts to better understand and improve care for individuals with long COVID.

Participants in this sample described their ‘new’ long COVID body as being discordant with their physical, occupational, and social obligations. This dissonance manifested as feelings of deep loss, sadness, and frustration. Mourning over one’s pre-illness identity and ability to participate in roles, responsibilities, and leisure pursuits has been reported previously with individuals affected by long COVID [25] and other chronic conditions, including fibromyalgia and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) [35–38]. Beyond sharing sentiments of loss, participants in this study also offered insights into how they have altered their day-to-day life to account for their reduced capacities and possible continued deterioration. For example, some participants described sacrificing their social activities to keep up at work; others had to leave work altogether or were fearful of termination; whereas others chose to engage in one task per day or to take breaks after every activity. These findings align with the recent conceptualization of long COVID as characterized by health-related challenges or episodic disability [39,40]. Looking ahead, exploring if and how individuals adapt to their post-illness body will be necessary. For example, post-exertional malaise can greatly limit the ability to engage in activities that could otherwise help prevent low mood and feelings of isolation [41]. When combined with severe functional limitations and the burden of educating others, there can be serious adverse impacts on mental health [41,42]. A deeper exploration of common symptoms, including post-exertional malaise, and their physical and psychological consequences, could disentangle the effects of long COVID from the secondary impacts on mental health - ultimately informing interventions and supportive care strategies.

There were multiple and varied ways participants described self-managing their condition, from consuming medical information and advocating for themselves to adhering to treatments that do not always offer relief. Participants also shared the additional challenge they faced in self-managing their condition within a system that challenged or contested their diagnosis. This sentiment of navigating one’s condition amidst doubts about authenticity has been reported in individuals with ME/CFS [43–47]. ME/CFS can occur after an infectious illness such as mononucleosis [48], but it remains a highly stigmatized health condition where patients are vulnerable to epistemic injustice in healthcare encounters [45]. The feelings of dismissal from healthcare providers expressed by participants in this sample, the conceptual ambiguity of both ME/CFS and long COVID, and the nature of symptoms which are numerous and hard to describe, may result in low credibility being given to the patient testimonial [45]. The recent recognition of long COVID as a real outcome of COVID-19 infection (for example, through being given a clinical case definition by the World Health Organization [32]) may help further legitimize the illness. Considering that long COVID is likely to lead to ME/CFS for some patients [49], an important next step is educating primary healthcare providers, who are the front line for patients, to recognize and validate their patients. Beyond this, equipping healthcare providers with evidence-based guidelines and referral pathways is necessary to better support a growing patient population as they adapt to long COVID.

However, educating primary healthcare providers with evidence-based guidelines and referral pathways may not be enough. There is a critical need to identify appropriate interventions and treatments, which may be best accomplished by including patients as partners in the development and evaluation of potential interventions and treatments. Anecdotally (and in the authors’ clinical experience), some individuals with long COVID are responding well to self-management, including activity pacing over extended time periods. Given that typical rehabilitation timeframes are often 2-3 months, and existing rehabilitation approaches (such as pulmonary rehabilitation) are unlikely to be suitable for the majority of people with long COVID because there are distinct clinical presentations [50], novel approaches may be necessary. For example, multidisciplinary, tailored interventions that leverage peer support may be most effective and should adhere to the recommended quality standards of being evidence-based, accessible and of minimal burden [26,27]. Occupational therapists, physiotherapists, and other rehabilitation specialists who have expertise and experience working with people who have been discredited in the past (e.g., fibromyalgia, ME/CFS or other chronic conditions resulting in drastically changed capacity or disability) may be best placed to work with patients to design appropriate and effective interventions and treatments. Furthermore, appropriate training of all professionals working with people with long COVID may enhance continuity of care and offer prolonged support for this cohort (as opposed to the often disconnected care pathways). Engaging with patients and learning from their experiences represents a valuable first step towards improving training and care.