Study explores individuals’ experiences with long COVID

The coronavirus disease 2019 (COVID-19) refers to symptomatic infection with the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). It occurs over a wide range of severity, from mild to fatal. In a subset of infected individuals, even among those with asymptomatic infection, it may become a subacute or chronic condition once the virus is cleared from the body.

Study: “I feel like my body is broken”: Exploring the experiences of people living with long COVID. Image Credit: Niphon Subsri/ShutterstockStudy: “I feel like my body is broken”: Exploring the experiences of people living with long COVID. Image Credit: Niphon Subsri/Shutterstock

A new preprint discusses, in qualitative terms, the impact of such a condition.

Background

Often termed Long Covid, the persistence of COVID-19-like symptoms, or debility, brain fog, and other distressing symptoms, for weeks or months after clinical resolution of infection is posing a formidable barrier for many people who seek to return to their normal lives after an acute episode of SARS-CoV-2 infection. Not only do they have to put up with the physical, mental and emotional symptoms, but they receive little help or recognition from the medical establishment because the syndrome is still being defined.

With things in such a fluid state, supportive strategies are not in place, and patients often feel they are being treated as malingerers or hypochondriacs. The current study, published as a preprint on the medRxiv* preprint server, sought to present the actual face of the condition in experiential terms.

The study included adults who had either suspected or confirmed infection with the virus and were thereafter experiencing long Covid. Of the 169 participants, almost 90% were women, with about a third being in the age group of 40-49 years. All reported having long Covid for at least six months.

Long Covid, also called post-acute COVID-19 syndrome (PASC), affects a significant minority of people with SARS-CoV-2 infection. The symptoms come from a wide range of organ systems, including cardiovascular, respiratory, neurological, skin-related, and gastrointestinal.

The most commonly reported symptoms include persistent tiredness, breathlessness, dry cough, brain fog, memory problems, dizziness, and chest tightness. More than one system may be involved. Moreover, the symptoms are often inconsistent, with the patient being almost well at times but unable to carry out normal chores the next day.

At first, the health force, combating a pandemic of such ferocity and extensiveness as had not occurred over the last century, had little time or attention for claims of delayed recovery and persistent illness, especially when no concrete evidence of ongoing infection or illness could be provided. This led to a unique situation where patients themselves got together to find out more about this condition.

As a result, long Covid has come to be recognized as a distinct and real entity. Yet, most of the descriptions come from hospitalized patients or include only those with a positive test result for COVID-19, thus narrowing the scope of the results.

Again, the use of close-ended questions may not allow patients to express clearly and specifically what they experienced as being the matter during this time. It thus ignores the valuable driving role played by patients in this research, assuming that the researcher knows better.

The use of qualitative methods in the current study was meant to bring out a greater depth of information and to capture the experiences of long Covid patients from different parts of the world, without the need for the patients to invest time and effort into social and emotional engagement with the researchers; rather, they can simply share their experiences with minimum strain.

What did the study show?

The results showed that the symptoms fell into several categories, mainly. These were:

Debilitating and multiple symptoms

The presence of many different symptoms meant it was impossible to remember them all or keep from being overwhelmed. It was hard to keep track of how they were waxing or waning with time and just to describe them. Even when a specific symptom was mentioned, such as fatigue, it was a different kind of tiredness from any previous experience.

Many said the fatigue was unrelenting, prevented any unusual exertion beyond the activities of daily living, and returned with a vengeance after exercise. Breathing difficulty that did not always fit the classical definition but was nonetheless a real challenge in daily life, or a distressing symptom, was also described.

The main struggles included having to cope with daily life even while suffering symptoms that waxed and waned unpredictably; not knowing if or when they would return to normal; a sense that their normal state of health and identity before the illness began had been irretrievably lost; a feeling of being betrayed or ignored by the healthcare system.

Other features included unpredictability, such that the participant never knew what to expect; the effect of constant and unpredictable but debilitating symptoms on the quality of life, their relationships, and their hope of eventual and full recovery. The patients sometimes described themselves as “disabled” by long Covid.

Impacting daily functioning

The patient felt unable to function as required or expected, such as caring for the family and the home, or even themselves in the worst cases. Often, they could not return to work. Social interactions were unimaginable, for many patients, due to fatigue and physical inability.

The resulting loss of income was a fear for many but was inevitable because of the weakness and tiredness. Others sacrificed social time to concentrate on work, knowing the strict limits of their energy.

Loss of exercise

Many participants were frustrated by their need to stop exercising or the known inability to spend time doing physical activity such as playing with the children or playing their favorite sports. Some of this withdrawal was due to the fear that they would become still weaker or more tired, resulting in the loss of capacity to care for themselves or their families – a conservationist approach to their energy.

No support system

A terrifying experience was unheard despite numerous calls for help to their medical care providers, leaving the participants feeling powerless and frustrated. This led to increased advocacy of their claims in the face of the reality that nobody knew anything about the condition, and few were willing to listen unless forced to accept this role.

Others tried every seemingly helpful treatment that came up during their search for help but often found no significant relief.

What are the implications?

The main theme of the responses was the feeling of being out of harmony with society, workplace culture, family life, and personal identity. The participants described the resulting feelings of grief, loss, frustration, and longing. This phenomenon has been described with other debilitating conditions such as fibromyalgia and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Another major response was the effort to cope with the new normal to accomplish the minimum that was thought essential for personal and family welfare, often discarding other valuable and rewarding but potentially demanding activities for this purpose. This supports the recent concept of long Covid as “episodic disability.”

For instance, depriving oneself of social interactions to conserve energy for work may appear to be the only way out but could lead to burnout and depression. Similarly, post-exertional malaise is a threat to the patient’s welfare by limiting the very things that could improve mood and provide a support system.

The results strengthen the case for further research into the causes, nature, and treatment modalities for this strange but highly weakening syndrome. Future research should explore such adaptive measures for their long-term feasibility, especially concerning supporting good health.

Even more, it is necessary to understand and describe how the failure of the healthcare system to recognize this condition (again, a response seen with ME/CFS) contributed heavily to the burden of the patients. Such a failure could have been due to the diversity and fluctuation in symptomatology between patients and at different times and the lack of definition of the condition.

As a result, patients had to suffer loss of functional capability and had to persuade others to take them seriously, thus endangering their emotional and mental well-being. These secondary effects of the condition on mental health will need to be disentangled from the primary effects, in due course, by well-designed studies.

Engaging with patients and learning from their experiences represents a valuable first step towards improving training and care.”

Guidelines for the diagnosis and management of this condition need to be evolved, based on available and upcoming evidence, always looking to the patients as the actual source of information in this hazy area.  

[The] results underscore the challenges individuals affected by long COVID face when advocating for themselves and adapting to their illness during the pandemic and amidst healthcare systems that are understaffed, at times disbelieving or unarmed (as of yet) with comprehensive treatment guidelines. More support and recognition for the condition are needed to help this cohort navigate the process of adapting to long COVID.”

*Important notice

medRxiv publishes preliminary scientific reports that are not peer-reviewed and, therefore, should not be regarded as conclusive, guide clinical practice/health-related behavior, or treated as established information.

Journal reference:
Dr. Liji Thomas

Written by

Dr. Liji Thomas

Dr. Liji Thomas is an OB-GYN, who graduated from the Government Medical College, University of Calicut, Kerala, in 2001. Liji practiced as a full-time consultant in obstetrics/gynecology in a private hospital for a few years following her graduation. She has counseled hundreds of patients facing issues from pregnancy-related problems and infertility, and has been in charge of over 2,000 deliveries, striving always to achieve a normal delivery rather than operative.

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