As the coronavirus disease 2019 (COVID-19) pandemic progressed across the world, leaving hundreds of millions of infections in its wake, about one in ten found themselves experiencing prolonged symptoms of ill-health even after the virus had been eliminated from the body and they had successfully recovered from the infection. A new preprint research paper deals with the mental baggage accompanying this condition often termed “long COVID.”
Study: ‘I had no life. I was only existing’. Factors shaping the mental health and wellbeing of people experiencing long Covid: a qualitative study. Image Credit: DesignPrax/ Shutterstock
A preprint version of the study is available on the medRxiv* server, while the article undergoes peer review.
The severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) has had an inconsistent effect on those it infects, with the majority experiencing no or mild symptoms. In contrast, a small but significant minority have a life-threatening illness, with up to 2% dying of its complications. Of those who recover, even those with no major illness to speak of, chronic symptoms have persisted in some for weeks or months.
Variously called ongoing symptomatic COVID-19, post-acute COVID-19 syndrome, ‘long-haulers,’ and long covid, this syndrome is the subject of little scientific curiosity and clinical interest. At present, the estimated number of individuals with long Covid is about 10% of those infected, which means that millions of people are affected.
The symptoms range from breathing difficulty, headache, tiredness, gut-related, loss of smell or taste, and sleeping difficulties to brain fog or psychological distress. The underlying reasons are yet to be elucidated. However, some scientists see common features in other conditions, such as the sequelae of prolonged intensive care unit stays or myalgic-encephalitis/chronic fatigue syndrome (ME/CFS).
The uncertainty about diagnostic criteria, pathophysiology, and treatment has led to difficulties in getting the care these patients need. This often means they resort to treating themselves by trial and error. The current study looks at all these factors to explore the mental health of people with long Covid, with a special focus on anxiety, depression, and post-traumatic stress disorder (PTSD), along with brain fog.
What did the study show?
The researchers relied on interviews with 21 people who claimed to have long covid, of different ethnic backgrounds, ages, and sexes. They were screened using the criteria proposed by Greenhalgh et al. 2020, including a positive swab test for the virus nucleic acid or a positive antibody test for SARS-CoV-2; alternatively, the presence of at least two of the following symptoms (persistent cough, change, or loss of smell/taste, or high temperature), coupled with one or more other symptoms at three or more weeks from initial symptom onset.
The interviews were conducted between November 2020 and September 2021, over an age group of 26-70 years. Two out of three participants were female, and the same proportion were White British citizens. All had been infected after February 2020 and before January 11, 2021, with an average of 12 symptoms lasting for a mean of 29 weeks by the date of the interview.
Fatigue was the most common, being reported by 95% of subjects, followed by muscle pain and weakness in 86%. Over 80% said they had shortness of breath, while more than three-quarters had concentration problems. Memory lapses were present in more than 70% of the subjects.
Approximately half had either a positive swab test or were seropositive, but only four had been hospitalized for the initial infection. Every participant reported being symptomatic at the time of the interview.
The researchers found five themes running through the interviews, which influenced the mental well-being of these individuals with long Covid. These included the availability of care and understanding from others, the lack of treatment options, the disruption caused by their symptoms to ordinary living, the lack of clarity about the outcome of their illness, and the changes it caused to their identity.
Support and care
People who felt supported and cared for by their social network of family and friends and health professionals were mentally happier and less anxious or lonely than those who did not, especially if their symptoms were not constant or faced uncertainty.
Especially when health professionals did not convey a sense of understanding or helpfulness, refused to continue to offer care, or said their symptoms were all in the patient’s mind, patients said they felt stupid and worried about being thought of as malingerers or hypochondriacs.
They also worried that they might be too anxious about their symptoms because doctors did not take them seriously. Some said that an expression of interest was sufficient to keep their spirits high, even if treatment options were limited, as it meant they were believed.
Practical support from friends and family, in the shape of shopping, talking things over, or general supportiveness was valued. In contrast, others said that after a few months, such support waned, with their family beginning to believe that the symptoms were mostly in mind.
Peer support groups were a source of support for many and helped them understand their condition and find ways to manage it or access services they needed. However, some acknowledged the need to filter out harmful messaging from social media groups to benefit from such support.
The inability to find a treatment that worked was frustrating for many participants, with over half saying they were not being monitored properly. This led to the fear that they were not accessing treatments that could help them, partly because their tests were not turning up any leads.
About one in three spent out of pocket on their healthcare or had employee insurance because they could not get National Health Service (NHS) care. The private care they got was helpful in some cases, especially since the NHS did not offer specialist referrals for many long Covid patients.
Disruption of daily life
Many participants said they had been very active before their illness started, at work, socially, or with exercise. However, the tiredness and cognitive impairment took a big toll on their ability to return to their jobs or daily routines. Even personal care became a big chore for some of them.
The loss of taste and smell was especially distressing as it took away an important avenue of stress relief that was still open under pandemic restrictions. The inability to participate in social activities for those who loved to be with others was also a big blow.
Some participants said they consciously shut themselves off because they did not want others to worry about them, while others felt guilty about putting more pressure on their loved ones. Still, others said they did not want to focus on their illness in talking to others.
New hobbies and enjoyable activities were important in helping them get through the day and create a feeling of accomplishment, thus elevating their mood. About half said they took gentle walks, listened to music or podcasts, played competitive games online, or did some drawing in a conscious attempt to shift their mind off their illness, fears, and depression.
Others said they could not do such things, ruing their inability to get out of the house or to exercise and regain fitness. One said she could not even enjoy cultural events because she got too tired afterward.
Most of the interviewees were anxious about the fluctuating nature of their symptoms, not knowing if any given day would be good or bad. This was described as very disheartening. Other fears were about the future, employment, financial stability, and family life, whether they would ever be able to look after their children and pay the bills.
People said they experienced a change in their feelings about themselves, losing some of their traits such as self-confidence, physical fitness, interest in their appearance, and self-care. They described having to let go of these things because of their prolonged illness.
Being unproductive due to their weakness, having to depend on others for support and care rather than taking care of their family or pulling their weight at work, led to the feeling of being unnecessary, a burden to others, or a loss of recognized status.
What are the implications?
The study findings build on earlier work by pinpointing the features of long Covid that are key to mental health and well-being from the patient’s point of view. This understanding should mold the development of healthcare services, prompt self-management strategies, and a broader societal concept of this condition and its impact on those who suffer from it.
For instance, some people said they benefited from private healthcare, which they had to pay. If this is the case, specialized services for long Covid should be set up along with more research into how to diagnose and treat this condition to broaden access to healthcare for those who cannot afford private care.
The importance of support, empathy, and validation from doctors, even if treatment was inadequate due to gaps in current knowledge, cannot be overemphasized. Peer support groups may also be useful, but with the caveat that they may also spread misinformation or advocate for useless or harmful remedies.
Our findings emphasise the need for accessible, patient-centred, specialist multidisciplinary healthcare provision.”
Occupational therapy, focused education of support networks for long Covid patients, and adapting existing guidelines such as the “Pace, Plan and Prioritise” strategy for physical activity, targeting this group of individuals, would be potentially helpful.
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.
- Burton, A. et al. (2021). ‘I Had No Life. I Was Only Existing’. Factors Shaping the Mental Health and Wellbeing of People Experiencing Long Covid: A Qualitative Study. medRxiv preprint. doi: https://doi.org/10.1101/2021.10.13.21264855.