Ethics statement

The project was approved by the Iowa State University Institutional Review Board (IRB ID: 23–158). Formal written or verbal informed consent was not required by the Iowa State University Institutional Review Board (IRB) as this project was deemed exempt. Participants read through a consent information sheet and indicated consent by clicking forward on the screen. Participants were encouraged to reach out to the research team with questions or concerns at any point during the research process. Participants also gave verbal consent for recording their interview prior to beginning the interview. The survey was completed prior to the interview in all cases to allow participants to read information about the study and decide whether they would like to participate prior to engagement in the interview process. Participants were free to skip any questions that they did not wish to answer during both the survey and the interview.

Participants and data collection

Semi-structured qualitative interviews were conducted over telephone with a sample of individuals with self-reported long COVID (N = 34). Participants were recruited from a prior online survey study probing the experiences of individuals with long COVID [18]. The parent study recruited participants through mass email and long COVID-specific social media sites. Individuals who completed the parent survey and self-reported long COVID had the option to offer name and contact information for future studies. These individuals were recruited via email for interviews, with other participants snowball sampled from prior participants. The recruitment period occurred from May 15, 2023, to August 1, 2023. The N = 34 was determined through the availability of funds and participants indicating interest in the interview, exceeding the number of interviews typically required to achieve saturation [19]. All eligible participants indicating interest were included.

Inclusion criteria included being ≥18 years old, being from the United States, English verbal communication abilities, and reliable internet and telephone service and devices. Prior to the interview, participants responded to a survey assessing sociodemographic characteristics such as age, gender, race, ethnicity, highest level of education, and income as well as several physical and mental health characteristics. An interview guide was prepared to probe for specific aspects of the lived experience, including physical and mental health symptoms and changes (“Which symptoms have been most impactful?”; “How do you feel your mental health has changed over the course of having long COVID?”), how plans, goals, and beliefs have changed since developing long COVID (“How has your experience with long COVID impacted your plans and goals?”; “Do you feel like you are the same person as you were before your infection?”), as well as the social impact of long COVID (“What has been the reaction of others in your life such as bosses, coworkers, or acquaintances?”). The interview guide and additional information about the interview study are available on OSF [18].

Total interview durations ranged from 38 minutes to 3 hours and 12 minutes. Participants were an average age of 51.6 (SD = 17.0) years, with most identifying as female (61.8%), white (97.1%), and not Hispanic or Latino/a/e (97.1%). Most participants had achieved at least a bachelor’s degree (79.4%), and nearly half of the participants (47.1%) reported earning greater than $100,000 per year.

Qualitative analysis

Analyses involved two coders. One coder was involved in project conceptualization and data collection, whereas the other coder was involved in coding and analysis only. An inductive thematic analysis method was used to code the interview transcripts. The two coders individually read the complete interview transcripts in sets of five randomly selected interviews at a time. The coders collected potential codes and discussed between rounds of coding to begin establishing a codebook, combining and condensing codes noted individually. Although code saturation was assessed after every 5 interviews, subcode saturation was not met, with each set of 5 interviews providing at least one new subcode, perhaps reflecting the heterogenous nature of long COVID [19–21]. However, it has been argued that saturation may not be required for impactful qualitative research [22]. Despite not reaching subcode-level saturation, all primary codes and final themes had emerged prior to the final set of interviews. After reading through all 34 interviews, the coders established a primary codebook and reviewed the interviews again to ensure that coding was complete [19–21].

Following establishment of the codebook, the coders individually coded each interview transcript. MAXQDA software [23] was utilized to code each document and compare across coders. Following independent coding, interrater reliability was assessed in MAXQDA. Codes with agreement of <80% with both unassigned and assigned codes counting as matches were reconsidered and discussed, with recoding resulting in agreement of at least 80%. Kappa (Kappa (RK)) [24] was utilized to assess agreement within each individual transcript across coders. The agreement by chance is 0.5, with a higher kappa score indicating higher levels of interrater reliability [24]. Following completion of coding, the coders jointly identified themes emerging from the transcripts. The range of agreement for individual codes ranged from 82.4% to 100%, with an average agreement score of 92.5%. The Kappa (RK) scores for individual interviews ranged from 0.90 – 0.98.

Decreased autonomy

Participants noted varying functional deficits both physically and cognitively as a result of long COVID. Many of these deficits impeded participants’ ability to function within several domains, including interpersonal, work, school, and leisure functioning. For some, this included physical limitations and physical dependence on others. For others, this resulted in a change in future goals and plans. Many spoke about frustration and grief related to this reduced autonomy as exemplified below:

“…there’s definitely a lot of grief in that process… that independent person that I used to be, just isn’t. I mean, I’m still very, I want to be independent, but I can’t; I have to rely on others a lot more now. And so that was a big spot with grief.”

“…I feel like I have less like autonomy. I think [I have the same perception of how the] world works, but I think I have less autonomy now that I get to decide if that happens or not, because I can’t….”

Participants spoke on the specifics of reduced functioning. They also noted a variety of physical impacts, including no impact, being limited in daily tasks, and being housebound or bedbound. This highlighted the diversity in experiences, as well as diversity in the degree of physical limitations and subsequent assistance needed from others:

“I’m dependent on someone else to do my ADLs [activities of daily living] now.”

“I got to the point where I was fully bedbound. Sometimes someone would have to walk me to the bathroom. I could not brush my teeth and shower in the same day.”

Many participants also noted that the condition impacted future goals or plans. Some noted slower or adjusted progress toward meeting goals, with little to no change in the goals themselves. Others described that they were unable to complete job tasks, live in the same place, or engage in the same activities. This further highlighted the diversity in experiences and variability in lasting impacts of participant symptoms and functional deficits due to long COVID:

“I still do have potential for, you know, making a career I enjoy. It’s just going to be different than what I envisioned… Personally that’s a little harder because I’ve been trying to get, you know, healthier and in better shape and it’s been very slow going with the struggles that I’ve been facing… That’s frustrating for personal goals, but for career goals, I feel like I can still, I can make it work, you know?”

“I had to move houses. I had to move in with my parents.”

Other participants referenced positive changes to goals and plans. This included an increased focus on spending time with loved ones and increased focus on health, in some cases by necessity. This also manifested as finding new hobbies and finding a new purpose in life due to experience with long COVID. This further highlights the diversity in perspectives experienced by participants, as some were compelled to recognize the positive impact of change within functional abilities:

“And even like just a little thing like hobbies that I’m doing now, like the Nintendo thing and like I’ve been crocheting and stuff that I really couldn’t do before. So just enjoying even though I have limitations, enjoying what I can and [am] capable of and finding ways to utilize that for some new hobbies.”

“I’m trying to do a lot more self-care now than I used to. I’ve found that it’s become more necessary.”

Decreased trust

Participant interviews highlighted a decrease in trust in several domains, including the healthcare system, larger societal systems such as the government, and within interpersonal relationships. Many participants linked this reduced trust to experiences with institutions while managing long COVID. Much of the mistrust in the healthcare system was attributed to participants’ negative interactions with medical providers and the healthcare system. Many participants noted a perception that the healthcare system and medical providers were unable or unwilling to provide them with the support they needed:

“I’ve had to give up on doctors. Doctors don’t believe me… the last doctor I saw, believed me... it was just like, well, I believe you, but good luck. I don’t have anything to do with that, so I can’t help you. And I don’t even know how I would help you, even if I could… and I apologize.”

“I’ve definitely found myself a lot more… compassionate to anyone who’s not healthy and definitely a lot more angry and frustrated at the state of, you know, the way medicine works in this country and all the countries and how it’s just not really helping anybody.”

Others noted increased awareness of the barriers that exist systemically for disabled or chronically ill individuals. Some participants described personal recognition of long COVID as a disability.

“The world isn’t really set up for disabled people… that’s something that I was oblivious to having nobody really close to me need a wheelchair or anything like that. But it’s very interesting to see from the other side how people treat you and how things just kind of aren’t set up for you.”

“It is a disability, you know, it’s something that, that makes you incapable of doing what you did before. And, you know, I fortunately have the kind of job where, you know, I can rearrange things so I can keep working. I don’t think it’s going to be any problem for me to keep going another nine semesters to retirement. Um, but I know there are plenty of people who have different kinds of jobs who, um, who probably can’t work anymore.”

Participants reported decreased trust in governmental systems as a result of long COVID experiences. Many reported frustrations with perceived misinformation and mishandling of the COVID-19 pandemic by governmental organizations. Some participants noted contextual factors, such as the political climate and divisiveness within politics at the time of the COVID-19 pandemic, as contributing factors to reduced trust:

“I have sort of much less trust in the government or the authorities or doctors or, you know, people you’re supposed to trust to help you out and take care of things. I don’t view anybody as competent or good at their jobs anymore. And probably prior… I never really gave it much thought or question. You know, it seemed a doctor knew what they were doing.”

“You know, I’m probably more suspicious of governments than I was before.”

Participants also described increased mistrust in interpersonal relationships. Some participants described this experience as recognizing more superficiality in relationships. This also impacted the participants’ worldview and views of society (further described in Social Impacts subsection below).

“I don’t trust people that much anymore… I don’t trust many.”

“And I don’t blame anyone, but you just learn that [things were just] surface level with some people.”

Changes in worldview

Participants reported several changes in perceptions of the world because of experiences with long COVID. Many noted changes to worldviews, changes in morals and values, and changes in religiosity throughout the trajectory of long COVID. These changes occurred at different time points and were prompted by several factors, each individual to the participant. Notably, many participants described changes in morals and values, as opposed to describing morals or values strengthening or weakening. It was also evident that these changes were related to changes in lifestyle and ability due to long COVID:

“I changed a lot of my morals. I had to switch my whole entire life around and kind of just look at a whole new perspective of life, I guess.”

“Yeah, I think a lot of people… put a lot of value on productivity and what you can get done in a day. And that can directly or indirectly be related to a sense of self-worth. So that was something that I really had to like struggle through, especially at the beginning…”

Participants also reported changes in religiosity because of long COVID. Some participants noted a decrease in religiosity, described as resentment for religious belief systems. Other participants noted an increase in religiosity. Participants also shared that religion provided them with perspective, offering a coping strategy throughout difficulties with long COVID. However, most participants noted experiences with long COVID had little or no impact on religious beliefs and/or religiosity, and reported maintained religious views or lack thereof:

“No, I’m a spiritual person but not a religious person, and I don’t go to church. I was raised going to church, and I just don’t go, but I still have the same sort of spiritual relationship that I always had before and beliefs. Nothing really changed there through the course of it.”

“I was an atheist, and I’m still an atheist.”

Participants also described broad changes in worldview. Participants noted positive and negative perspective changes, which varied by participant and were defined through the participants’ perception of the change. Some participants noted worldview changes in increased ability to enjoy things, improved optimism, increased desire to remain present, increased focus on themselves, and taking less for granted. Other participants noted increased pessimism and an increased notion that the world is unfair. However, there was also nuance in how individuals perceived these worldview changes:

“I think it changed my outlook on [self-care]. It made me realize that I wasn’t going to be… immortal in a body that couldn’t be broken.”

“I have no idea what’s going on in the world anymore. So it has shrunk to my world as myself and my immediate family as much as I can. [Previously] I was very, very active in things that were going on. Now, [I’m] not… So my worldview is myself.”

Social impacts

Participants had varied experiences with social support while managing long COVID. Some reported positive social interactions and support within interpersonal relationships. Others reported frustration with the social support offered by family, friends, coworkers, and other social relationships. Many participants noted recommendations for improved social support including improved education, increased respect for functional limitations, increased sympathy, and willingness to offer assistance through long COVID. Notably, several of participants reported a significant decrease in social interaction, due to symptoms:

“And so I’ve had to stop doing things or have chosen to stop doing certain things, especially a lot of after hours social stuff.”

“I mean, because there is days literally, there’s days that I can go 24 hours without opening my mouth and speaking a word to another human being.”

Participants also reported on several satisfactory social support interactions, including physical assistance, patience, and accommodations to shared activities. Participants noted satisfaction with others’ willingness to educate themselves about long COVID, emotional support, and validation or belief in symptoms:

“Um, you know, like I said, everybody has been pretty supportive. I haven’t had to deal with anybody, but yeah, I think it helps that for the most part, friends and family are all highly educated. And so, you know, it’s not like I have anybody in, anybody who’s, I’m in a close relationship with who, who doesn’t believe in this stuff.”

“Um, a lot of people have been very supporting, almost all actually. I did have some people, like say that I was faking it and stuff, but that was all years ago. So it doesn’t really matter anymore, but almost everyone was very supportive, even though they didn’t understand it.”

Conversely, many participants noted unsatisfactory social support interactions. These interactions often had themes of disbelief in long COVID or the impact of long COVID symptoms. This manifested as others misunderstanding functioning limitations, providing misguided advice, attributing symptoms to psychological factors or other environmental factors, and placing blame on participants for long COVID symptoms. Other participants noted dissatisfaction with the pity they received from others. Participants expressed frustration from invalidation, and some noted decreased trust in their appraisal of reality:

“And my stepmom insinuated that I needed like mental health medication and brought up a history of like family mental illness and I just thought like, you know, I don’t know, like, am I losing it?”

“I don’t know that there is a single person in my life who believes that I have it. [...] And I feel as I get better or my symptoms get less severe, the less they believe I have it or I have ever had it.”

These themes of satisfaction and dissatisfaction were also revealed in employment and academic social relationships, with participants noting appreciation for the availability of accommodations and flexibility within the workplace or in academic realms. However, similar unsatisfactory interactions, including lack of understanding of limitations and symptoms and lack of knowledge about long COVID, were also present. Some participants noted encouragement from employers to resign or the expectation to return to prior level of functioning:

“Uh, with my, uh, with my bosses and coworkers, I think at first there was a lot of understanding when, you know, when I was fresh off of having the major infection. Uh, and then I think there’s a lot of frustration as, as I wasn’t being able to be as helpful. Um, cause as I said, my, my job performance physically dropped off. Um, and they, I know my boss, uh, in my former position was very understanding about it, but you know, there was just, there were certain expectations of things I needed to be able to do. Okay. So, so understanding, but frustrated.”

“Yeah, they were not very understanding. Um, and they tried to, like, I don’t know, coerce or like threaten me to come back to work. And I was also told that I needed to like resign or quit.”

Participants reported varied interactions with other support systems, including social media platforms and long COVID support groups:

“I learned that you can’t join still COVIDing [still taking precautions to avoid COVID-19] groups with long COVID because most of those people, and great for them, have never had COVID, so they don’t understand. They don’t understand, and also, there’s a stigma. There’s a stigma to the people who have never had COVID. There’s a stigma on those of us who have gotten it, even though I think they’re stating now it’s like a good 98% of the population, which is weird. It’s weird. The stigma put on COVID is weird. It is so weird. I think it was always weird.”

“I have a very good Twitter long COVID group. I have one, a care group on Facebook, and additionally at [school], we have a group of physicians, nurses, and mid-level providers who all got long COVID, and we communicate.”

Additionally, participants also noted themes of judgment and visibility concerns in experiences with others. Participants noted judgment from others around the general topic of long COVID or regarding safety precautions they adapted or maintained. Speaking to the variability in long COVID symptomatology, many participants noted difficulty with the (in)visibility of long COVID symptoms. Some reported wishing long COVID symptoms were more visible, and some wished symptoms were less visible. Participants noted frustration with others’ (e.g., friends, family, employers, physician) dismissal of milder symptom profiles:

“I can’t do the normal things. And then society thinks I should be able to. Like I look normal.”

“I think like I say, the big thing is that people with the milder symptoms, I think can get neglected and looked over. The people that have more like the breathing issues and things like that, it might be that people are more concerned with them and work towards getting them to a better place. Well, maybe, like I said, the dizziness and the vertigo or anything else, those milder effects, it’s like, yeah, you know, live with it.”

Secondary to these interactions, several participants noted changes in perceptions of others, including society more broadly. This was described as lower tolerance for society and others, as well as decreased hope related to humanity:

“I don’t know if our society cares about other people anymore really because it doesn’t seem like anybody cares about anybody else period, whether it’s you’re sick or you’re not…”

“People are mean, like my worldview, I guess that’s what you’re speaking of. People are awful. They’re awful. They’re nothing like, I mean, my hope for humanity has left since I’ve had long COVID. I stopped recycling because I don’t want people to live. I want the world to live, I want the world to live, but I don’t want people to live. I mean, it sounds crazy, but I don’t. I don’t want humanity to survive. Like I don’t.”

Uncertainty

The varied nature of long COVID experiences contributed to uncertainty and distress throughout managing long COVID. Participants noted variability in prior knowledge of long COVID, the trajectory to long-term symptomatology, the trajectory of the illness, as well as a range of symptoms, treatments, and interactions with the healthcare system. Some participants described no prior knowledge of long COVID, and others reported limited knowledge or incorrect perceptions of the duration, severity, or symptom types of long COVID:

“I perceived it to be people that had the more serious forms of COVID than what I had.”

“If you didn’t go to the hospital, I didn’t think it was going to be an issue, I guess.”

As symptoms persisted, the progression into long-term symptoms differed across participants. For some, acute SARS-CoV-2 infections persisted into long-term symptoms, whereas others improved after the initial infection and saw a decline in functioning over time or after subsequent SARS-CoV-2 infections. Many participants reported on the unpredictability of the trajectory to long-term illness:

“I didn’t know what was going on. I had no idea, but it was three weeks after infection. And I had no idea that all these symptoms could come up three weeks after infection and be caused by my COVID infection. Like I had no clue. So at the time, no, I didn’t think it was long COVID… We had no idea what was going on...”

“So it was like, I must’ve been either, you know, I had it and it was before the testing or something, but it took a few months after like getting sick before I felt the long COVID symptoms start.”

Throughout the duration of long COVID, participants also described uncertainty in the trajectory of long-term symptoms, sometimes causing significant distress. However, other participants noted hope for improvement in the future:

“But that’s also part of the grief is figuring out whether to accept like, is this a long-term thing, is this the rest of my life thing, or is this something that I can say like has an end and I’ll be able to be a normal person at the end of it?”

“I was so sure I was going to get better. I still think I will get better-ish. I just don’t know that I can get back to the level of functioning that I was before, both physically and mentally, because I know that my cognitive abilities are not what they used to be. I don’t know if that can be improved or not, or maybe I’m just stuck with this.”

Participants also described a variety of symptoms and symptom fluctuation over time. Participants noted difficulties with predicting symptom severity day to day, as well as difficulty identifying activities that trigger or relieve symptom impacts. This seemingly further contributed to the overall sense of uncertainty related to experiences with long COVID:

“Honestly, it’s kind of more frustrating because it’s like, I start off the day, it’s like, okay, is it going to be fine all day? Is it going to be fine until some point? Is it going to start off bad and then I get fine later on, but it’s pretty unpredictable.”

“Yeah, it’s hard to say, it’s really hard to say, because there’s, I’ve tried so many ways at this point, it’s been three years, I’ve tried so many ways to stabilize things and make things feel better and whatever, and they’re really, it’s really hard to put a finger on any one thing that helps and that maintains, you know, a good day.”

Furthermore, participants reported a diverse range of prescribed treatments for long COVID with varying degrees of success. A common trend, however, was being referred to several providers and specialists, often with conflicting or unsuccessful treatment recommendations. Many participants reported on medical providers’ lack of knowledge regarding long COVID due to the novelty of the condition, as well as lack of available research on long COVID. This contributed to feelings of frustration and uncertainty among participants:

“But they weren’t finding anything because it was like not a root of the problem kind of thing. So it was a lot of just after that, a lot of going to different specialists and [getting results] of normal.”

“And I wish, I mean, if there are doctors out there who are doing more specific things or might have more breakthroughs, I wish they would research them and refer more. But a lot of them have just been like dead ends, but I know they don’t have to be.”