"I feel like my body is broken": exploring the experiences of people living with long COVID

Abstract

Purpose Long COVID, an illness affecting a subset of individuals after COVID-19, is distressing, poorly understood, and reduces quality of life. The objective 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 responses. Methods Data were collected from adults living with long COVID who participated in a larger observational online survey. Participants had the option of answering seven open-ended items. Data from the open-ended items were analyzed following guidelines for reflective thematic analysis. Results From 213 participants who were included in the online survey, 169 participants who primarily self-identified as women (88.2%), aged 40–49 (33.1%), who had been experiencing long COVID symptoms for ≥ 6 months (74%) provided open-ended responses. Four overlapping and interconnected themes were identified: (1) Long COVID symptoms are numerous and wearing , (2) The effects of long COVID are pervasive , (3) Physical activity is difficult and, in some cases, not possible , and (4) Asking for help when few are listening, and little is working . Conclusion Findings reaffirm prior research, highlighting the complex nature of long COVID. Further, results show the ways individuals affected by the illness are negatively impacted and have had to alter their daily activities. Participants recounted the challenges faced when advocating for themselves, adapting to new limitations, and navigating healthcare systems. The varied relapsing–remitting symptoms, unknown prognosis, and deep sense of loss over one's prior identity suggest interventions are needed to support this population. Supplementary Information The online version contains supplementary material available at 10.1007/s11136-022-03176-1.

"There is no one who helps you with it." Experiences of people with long COVID regarding medical care, therapeutic measures, and barriers in the German healthcare system: results of a qualitative study with four focus groups

“…Framing by existing evidence Wurz et al point out that many people with long COVID have di culties in seeking treatments that improve their health situation. However, individual participants noted modest relief of symptoms following certain pharmaceutical and non-pharmaceutical treatments (e.g., dietary changes, physical therapy) [43]. Similar to the respondents from this sample, other studies also indicate that group meetings supported by psychotherapists, tailored training programs with strength and endurance exercises, and adapted rehabilitation measures have a positive in uence on the recovery process of affected individuals [6], [49]- [51].…”

“…This represents an additional psychological burden for those affected [22], [23]. In a study by Wurz et al [43], the majority of participants with long COVID reported ignorance or rejection by their primary care providers, leading to helplessness and frustration. Other studies emphasized the need to take patients seriously with their symptoms [24], [25].…”

Brain Fog and Fatigue following COVID-19 Infection: An Exploratory Study of Patient Experiences of Long COVID

“…Early qualitative research on the broader patient experience of COVID-19 has revealed some common themes including symptom variability, a heavy sense of stigma, siloed care, the burden on patients to access care, and fear of a permanent reduction in physical and cognitive abilities [ 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 ]. Open-ended survey studies have also highlighted themes such as multiple symptoms with variable intensity, challenges seeking medical care, motivation to move forward with self-compassion, and also interest in participating in research to explore more about the condition [ 10 , 28 , 29 ]. A recent meta-analysis of 81 studies reported 32% of patients experienced fatigue and 22% reported cognitive impairment 12 or more weeks after COVID-19 diagnosis [ 30 ].…”

Mental Health of Working Adults during the COVID-19 Pandemic: Does Physical Activity Level Matter?

“…Most of the recreational facilities were closed and repurposed as vaccination venues. As a result, a reduction in physical activity was expected [ 4 ].…”