Introduction

The long-term impacts of the COVID-19 pandemic on the health of the population are gradually being acknowledged. It is understood that SARS-CoV-2 not only causes acute pulmonary complications but is also associated with persistent manifestations that compromise various organs and systems of the body. ¹ In this context, the post-COVID-19 condition has gained prominence in health research, especially due to its negative impact on the quality of life of affected individuals.

The term “long COVID”, translated into Portuguese as “COVID longa”, was first used in May 2020 by British researcher Elisa Perego, when she reported her own experience with the disease. ² It is acknowledged as the first term to be collectively adopted by people themselves through social networks to describe that condition. ² Long COVID was identified from patient reports, and still exists mainly through them to this day. ³ In October 2021, the World Health Organization (WHO) introduced the official definition of “post-COVID-19 condition”, highlighting it as an initial step towards improving the recognition and care of people in this condition, both in community settings and in health services. ⁴

The post-COVID-19 condition describes symptoms that usually appear three months after the onset of coronavirus infection, last for at least two months, and cannot be explained by an alternative diagnosis. Symptoms may arise after initial recovery from an acute episode of COVID-19, persist from the onset of illness, or fluctuate or recur over time. ⁴ With a conservative estimate of 10 %, the prevalence of the post-COVID-19 condition in the world would reach around 75 million people, with approximately 4 million cases in Brazil. ⁵

Several persistent symptoms have been identified in the literature, in both mild and severe cases of COVID-19 infection, the most frequent of which being fatigue, dyspnea, anosmia, sleep disorders, arthralgia, headache, cough, memory changes and impaired mental health. ^6,7 These prolonged manifestations resulted in loss of productivity, difficulties in returning to daily activities and work, in addition to requiring health resources for investigation, treatment, and rehabilitation. ^7,8

The post-COVID-19 condition has a significant impact on people’s lives, affecting both physical and mental health. A study in Italy showed that 87.4 % of patients had persistent symptoms, such as fatigue, dyspnea, and joint pain, which impaired their quality of life even 60 days after discharge. ⁹ Similarly, a study in Sweden revealed that 77 % of participants reported low life satisfaction, and 98 % of these attributed this deterioration to COVID-19. ⁷

The post-COVID-19 condition transforms the way people experience and signify their bodies, causing detachment and emotional suffering. The experience of illness is not limited to a set of biological symptoms; it also involves narratives, meanings, and a reconfiguration of the subject’s identity. ¹⁰ Fatigue, even in simple activities such as talking or performing household chores, redefines the limits of everyday autonomy. ^9,11,12 Memory loss and difficulty concentrating destabilize confidence in one’s own cognition, affecting not only their performance in tasks, but also their perception of continuity of the self. ^13,14 Musculoskeletal limitations and difficulty in walking impose barriers to mobility, causing the body to be experienced as fragile, unpredictable, and dependent. ^15,16

When taken together, these elements show that the post-COVID-19 condition is not limited to the presence of isolated symptoms, but alters the way the subject inhabits, recognizes, and signifies their body, producing experiences of estrangement and the need for readaptation. ^17,18

The lack of conclusive diagnoses and the persistence of symptoms challenge the identity of those affected, who may feel like a burden to others and experience frustration, guilt, and loss of self-esteem. ^18,19 This process is not limited to recovery, but involves a reconstruction of identity and life trajectory, making a multidisciplinary approach essential in the care of post-COVID-19 individuals. ³

With the increase in the population recovered from COVID-19, it is necessary to understand the health issues associated with the post-COVID-19 condition. The diversity of signs, symptoms and affected systems poses a clinical challenge, making long-term monitoring and rehabilitation with multidisciplinary teams essential to better recovery, with care tailored to the patient’s clinical profile. ^20,21

For these people, the full recognition of the post-COVID-19 condition as a distinct pathological entity, coupled with the validation of their experiential knowledge, goes beyond opening up ways to relieve physical and mental suffering. This recognition also symbolizes justice, reparation and an essential step forward in rebuilding their lives. ³

Despite the advances in research into the post-COVID-19 condition, most studies have focused on biomedical, clinical, and epidemiological aspects, and fewer have considered the subjective experiences of those affected and their families from a qualitative approach. The study investigates how these people experience and resignify their bodies and daily lives in the face of the limitations imposed by the post-COVID-19 condition, contributing to the development of more humanized and integrated care strategies. In view of the above, this study aims to understand the bodily experiences of people in a post-COVID-19 condition and their repercussions on activities of daily living.

Materials and methods

Results

Among those in post-COVID-19 condition, there were five men and five women. In terms of age, five participants were between 50 and 59 years old, three were between 40 and 49 years old, one participant was 37 years old and one was 24 years old. Six did not have a partner. Regarding the need for hospitalization, eight were admitted and, among these, six needed an Intensive Care Unit (ICU) and five received Mechanical Ventilation. The length of their stay ranged from 18 to 96 days. Considering the start of data collection, all participants had been diagnosed with the post-COVID-19 condition for more than nine months and were in the process of rehabilitation.

Among the family members, nine were women. In terms of relationships, the participants were daughters, mothers, spouses, stepmothers and cousins. As for age, seven were over 40.

“This is Something that Really Marks a Person”: Bodily Experiences of People in Post-COVID-19 Conditions

The complications experienced by people with post-COVID-19 condition were: fatigue, shortness of breath, cough, chest pain, muscle pain, loss of fitness, lack of appetite, heart failure, difficulty concentrating, memory loss, dizziness, anxiety, and depression (Figure 1).

Figure 1: COVID-19 complications reported by participants 

Fatigue is one of the symptoms that persist for more than ten months past COVID-19 diagnosis. It is experienced both at rest and in motion, for example, when talking, walking, or performing certain household activities such as cooking, tidying up, washing the patio, etc. Other symptoms are sometimes associated with fatigue, such as “shortness of breath”, “difficulty breathing”, and coughing. These findings can be seen in the following statements:

Sometimes I get tired. If I walk too fast, climbing those stairs there makes me a little tired. (P01F59y) When I left the hospital, I got tired after taking two steps. Today, I can go the whole day without oxygen. I walk, sometimes I go to my sister’s house. I go slowly, but it’s enough for me. (P02M53y) Because I’ve noticed that all I have to do is make a physical effort, go for a walk, for me to become breathless. It doesn’t happen often, but when I exert myself physically, like when I lift weights, I get this shortness of breath. (P08F45y)

To cope with fatigue, people with post-COVID-19 conditions “rest”, “stop” or take a break for certain periods of time to regain their “strength”. Participants also report complications such as memory loss, difficulty remembering and recalling recent and past situations, and difficulty concentrating. “Forgetfulness”, a term used by participants, negatively influences the development of daily activities, relationships with family members, and family life, as observed below:

From time to time she forgets things. The other day she was saying that it’s bad for her to cook when she’s alone, because she puts the pan on the stove, sits here, and forgets about it. (F04M67y) She (wife) tells me things, at the time she tells me and in a moment I’m thinking, what did she say? I try to recall it in my mind, sometimes I get nervous and can’t remember, I just can’t. (P06M53y) The other day I went out and kept thinking, my goodness, did I lock the door? I was worried, but I had. And I look at the stove 30 times to see if I turned off the heat, the kettle, something. (P09F37y)

These complications were noticed by family members in their daily lives at home, leading them to develop certain practices to deal with them. These practices include time management, memory exercises, and reviewing certain activities, such as checking more than once to see if the door is locked or if the stove has been turned off, among others.

Other sensations and difficulties described by the participants were paresthesia, paresis, difficulty walking and even moving, using terms such as “loss of strength”, “tingling sensation”, “numbness”, “weakness”, as observed in the following findings:

In reality, it was a period of adjustment. I couldn’t steady my legs, especially my left leg. I couldn’t steady it. So it took almost three months of treatment before I could walk normally. (P03M56y) I couldn’t sit up, I was like a baby, I would fall to the side or fall backwards. When I bend down to pick things up like this, my legs feel weak; they’re not very steady yet. (P04F59y) I have a lot of difficulty getting on and off the bus, I’m very slow, sometimes I even look like an old person getting off, very slowly, holding onto things (...), I feel like I don’t have any strength in my body. (P06M53y)

Complications such as “loss of strength,” “tingling sensation,” “numbness,” and “weakness” make it impossible for people in post-COVID-19 condition to perform activities such as walking, grasping objects, performing hygiene, socializing with other people in other spaces in the community, among others. This makes them depend on receiving help to carry them out, requiring them to adapt in time, in the environment and in their relationships with family members. As time passes and the illness process progresses, the body “recovers” its “normality”.

Weight loss was reported by people in post-COVID-19 condition. It began at diagnosis, then hospitalization, and continued upon their return home. This complication resulted in “thinness”, which led them to not recognize and perceive their own bodies. Some reported “not feeling like eating” and “loss of taste of food,” however, it is clear that this complication occurred in participants who required prolonged hospitalization in the ICU.

By the time I left the ICU, I had lost more than thirty kilos. I didn’t even recognize myself on the bed. But I looked, I didn’t recognize myself because of how thin I had become. (P02M53y) I was very, very, very thin, and I usually left the bathroom, took a shower and didn’t even look at myself in the mirror. And I’ve always been someone who looks in the mirror twenty-four hours a day, that dresses up, and I didn’t look for a long time. (P05M24y)

I lost 30 kilos all in muscle mass, I was unrecognizable (...). (P09F37y)

People in post-COVID-19 condition experience complications such as “crying”, “fear”, “anxiety” and “depression”, noticed by family members, who step up to support them. These findings are represented in the following excerpts:

But sometimes I get a bit like this (depressed, tearful), I remember that, but I’m here. I start whining, then I remember, but I’m here. Thank God I’m here, why are you crying? It’s over now. But there’s no forgetting it. (P01M59y)

And emotionally, I feel he needs to be more careful, sometimes I notice he’s more depressed (...). (F02F27y)

There are days when I see that he’s very upset, he doesn’t speak, he sleeps or he cries, I tell him to calm down, it’ll pass, there’s no point in getting ahead of yourself. (F06F49y)

Life has changed in countless ways for those dealing with symptoms of the post-COVID-19 condition. This means having to quit their jobs, cut back on expenses, choose from and/or give up activities they enjoyed before falling ill.

Discussion

In this study, people in a post-COVID-19 condition reported fatigue, dyspnea, memory problems, anxiety, and depression, among other symptoms. These findings are consistent with the literature on long COVID. ⁴ A prospective Brazilian study with 58 participants reinforces this evidence, showing a high rate of hospitalization during the acute phase and, after 15 months, persistence of complications such as fatigue, dyspnea, sleep disorders, and memory deficits, with a relevant impact on quality of life. ⁶ Even tasks considered simple became strenuous, forcing participants to reorganize their routines. As pointed out in the literature, ^{(9, 11, 24)} fatigue is persistent and impacts daily life.

Memory loss and difficulty concentrating emerged as complications of the disease. These reports corroborate the literature, ^11,13,14 and here they are marked by insecurity and the need for constant family support.

Similarly, musculoskeletal limitations, expressed in terms such as “loss of strength” and “weakness”, not only restricted mobility, but also produced a feeling of dependence and estrangement from one’s own body. Thus, more than confirming previous findings, ^15,16 the results show how these bodily changes directly impact on the identity and autonomy of individuals, requiring continuous efforts to readapt in everyday life.

The experience of post-COVID-19 condition shows profound transformations in the way individuals perceive and signify their bodies. Reports indicate that the body, formerly an instrument of autonomy and functionality, is then perceived as a limitation, a “foreign body” that requires constant effort to adapt. This reconfiguration of the bodily experience directly affects the identity of those with post-COVID-19 condition, producing feelings of estrangement and frustration. For many, seeing themselves as thin, frail or dependent on diapers does not correspond to the image they had of themselves, which refers to the notion of loss of identity.

According to the interviews, weight loss was experienced with estrangement, which made some participants not recognize themselves in the mirror and avoid looking at their own bodies. This perception of fragility and an “unrecognizable body” is connected to other complications described in the literature, such as changes in skin color and hair loss, which intensify the feeling of living in a body that is not one’s own. ¹⁷ Similarly, prospective research in Italy identified significant weight loss in a significant portion of participants, reinforcing that COVID-19 can seriously compromise nutritional status. ²⁵ However, the findings of this study go further by showing how these bodily changes are not restricted to clinical aspects, but also have repercussions on identity, self-esteem, and the way individuals relate to themselves and others.

Symptoms such as anxiety, depression, and sleep disturbances were cited by people in a post-COVID-19 condition, manifesting themselves in crying episodes, hopelessness and social isolation. These findings are consistent with the literature, which points to a high prevalence of psychological distress in this group. ^26,27,28 In addition to the persistence of anguish and uncertainty about the future, studies also describe the fear of reinfection, relapses, and difficulties in reintegrating into the workforce, which can even lead to suicidal thoughts. ^27,28 Thus, the results found reinforce that adaptation to the post-COVID-19 condition involves a process marked by emotional suffering and loss of quality of life, demanding psychosocial support integrated into care.

The first meeting of people in the post-COVID-19 condition with family, neighbors and friends at home was described as “impactful”, especially due to the visible physical transformations in the body. Those who have survived the infection have faced several complications, such as those already mentioned, which directly affect their daily activities, including personal hygiene, eating, getting around, social relationships, and employment status.

These complications vary in intensity and can hinder and delay the rehabilitation process, as well as alter routines, require adaptations in daily activities, and change family roles and relationships. In other words, these complications have transformed the lives not only of the people who have had the disease, but also of their families.

According to the participants’ accounts, their body, once capable of carrying out everyday tasks, came to be seen as a barrier to be overcome. People affected by COVID-19 have to deal with the new limitations imposed by their bodies. What was once considered “easy” and natural, such as walking, lifting objects, performing daily activities or leaving the house, has become difficult or even impossible without the help of other people.

The findings of this study are consistent with research carried out in Sweden, which showed different trajectories after COVID-19: while some people reported a return to normality, others expressed deep suffering from no longer recognizing themselves. ¹⁸ This experience, often lived as a process of mourning, reflects the rupture between the “before” and the “after” of the infection, affecting not only physical functionality, but also subjective and social dimensions.

The persistence of symptoms significantly compromised the health and functionality of the participants in this study, with direct repercussions on their working lives. Many reported difficulties or inability to return to work, whether due to fatigue, brain fog or motor limitations, which resulted in delays, prolonged leave or the need for accommodation. These findings reinforce evidence that the post-COVID-19 condition often leads to reduced work capacity, with economic repercussions for families.^12,17,27 The experience of the participants shows that work was an indicator of recovery and return to normality, but also a space of frustration and stress in the face of persistent limitations. Thus, the results presented deepen the understanding of previous studies by showing that the impact on work goes beyond the metrics of return or absence, involving self-perception of competence, self-esteem, and the reconstruction of life projects. ^29,30

The reports indicate that the family plays a fundamental role in the rehabilitation process of the post-COVID-19 person, providing emotional support, encouragement and help in resuming daily activities. However, this support can also come with challenges, such as the need for family members to adapt to the new context of care. Many show concern about the ability of their loved one to resume their professional and social life, encouraging them to leave isolation and prepare for an eventual return to work.

The literature recognizes the importance of the family in the recovery process, especially in the early stages, in providing support for individuals to recover at their own pace. In addition, the family encouraged participation in rehabilitation programs, activities, and exercises. In some cases, family roles were adjusted, with redistribution of tasks among family members to ease the burden on participants at home, ²⁹ corroborating the findings in our study.

The numerous complications caused by COVID-19 have brought to light the need for rehabilitation for this population group, creating a new challenge for the health system. In this context, post-hospital discharge rehabilitation began to be indicated as a strategy to improve the evolution and prognosis of patients, leading to the adaptation of specific programs to meet this demand. ¹⁶

Strengthening rehabilitation services in the public network and expanding access to specific programs are fundamental measures to mitigate the impacts of the disease and give people in a post-COVID-19 condition the ability to return to activities of daily living, the job market and society.

In this study, people used services from the Brazilian Universal Healthcare System (SUS) network, such as primary care health units, outpatient clinics, the Home Care Service and Psychosocial Care Centers (CAPS), as well as specialized care both in the public and private sectors. Some participants reported that, upon discharge from hospital, they were referred to appointments at the post-COVID outpatient clinic and the Better at Home Program, while others were referred to care and rehabilitation by primary care health units.

In addition to physical rehabilitation, participants express concerns about regaining their self-esteem and the role they played in society. The fear of not being able to return to work or perform previously habitual activities suggests that the post-COVID-19 condition directly impacts the perception of identity and social belonging. Family and professional support play an essential role in this process, helping these people to rebuild their identities and resume their activities safely and progressively.

The full long-term impacts of COVID-19 on the health of the population are not yet known, nor is it possible to determine how long these people will need healthcare. Therefore, it is important to develop longitudinal studies to clarify these gaps, thus guiding public policies that allow the reorganization of health services in light of this reality. ¹⁶

This study has some limitations. It was carried out in a single health service, located in a medium-sized city in the southern region of Brazil that has a post-COVID outpatient clinic integrated into the health network, which restricts institutional and sociocultural variability. In addition, this sample consisted of individuals linked to this service, which may exclude the experiences of people who have not been able to access specialized care or who have only resorted to private services. Moreover, the intentional sampling and small number of participants, typical of qualitative studies, despite favoring an in-depth understanding of the phenomena, limit the representativeness of other realities, especially of more vulnerable groups.

Despite these limitations, the findings offer relevant contributions. People in a post-COVID-19 condition shared their own knowledge about their illness, built from the daily experience of symptoms and the reconfiguration of their routines. Thus, by highlighting the post-COVID-19 condition as an experience that is not only medical, but also existential and social, ³ this study broadens the understanding of the repercussions of the illness and provides support for the development of future investigations and more integrated and humanized health actions.

Final remarks

Surviving COVID-19 marks the beginning of a process of identity reconstruction and adaptation to a new reality. The experience of the post-COVID-19 condition leads to a resignification of life, highlighting reflections on capacities, limitations and the search to regain autonomy.

Given the physical, psychological, social and work-related impacts identified, it is essential to deepen knowledge about the prolonged effects of COVID-19 and develop more effective and personalized interventions.

The findings broaden the view beyond the biomedical model, highlighting the need to incorporate subjective and social dimensions into healthcare and reinforcing the importance of recognizing experiential knowledge as part of the therapeutic process and valuing it in the formulation of rehabilitation strategies and multidisciplinary patient management.

In this sense, this study contributes to strengthening more integrated health practices, taking patients’ narratives into account. Finally, it highlights the need for public policies that expand access to rehabilitation services and ensure continuous follow-up, considering that the post-COVID-19 condition is not limited to a clinical condition, but represents a process of existential and social reconstruction for people.