In a study from Edmonton’s Long COVID Clinic, scientists found high levels of stigma experienced by some COVID long-haulers are linked to more intense symptoms, reduced physical function, and loss of employment due to disability.
Long COVID is characterized by non-infectious symptoms such as fatigue, cough, shortness of breath, brain fog, joint pain, headaches, diarrhea, or rashes that persist for longer than three months following acute infection with SARS-CoV-2.
Scientists began hearing patient stories suggestive of stigma as soon as the clinic became operational in June 2020.
They developed a questionnaire designed to quantify the stigma being reported. They compared scores on the stigma questionnaire to other measures of health and well-being.
The team found that people with higher levels of stigma had more symptoms, lower function, reduced quality of life, and a greater chance of unemployment due to disability.
The team noted that stigma is considered to be a social determinant of health, a non-medical factor much like poverty, lack of educational opportunities, or food insecurity that can have a major impact on physical well-being.
The long COVID stigma survey was completed by 145 patients, and results were cross-referenced with information from their medical records, such as six-minute walking distance, clinical frailty score, number of other illnesses, and number of emergency department visits.
Patients who experienced stigma were found in all demographic categories, but average scores were higher for women, Caucasians, and people with lower educational opportunities.
The overall average stigma score was 103 out of 200 or approximately 4/10, where 0/10 represents no stigma and 10/10 is severe stigma.
The team found patients with higher stigma scores had a higher likelihood of more severe symptoms, anxiety, depression, reduced self-esteem, and thoughts of self-harm, and were more likely to be unemployed due to disability.
They were not allowed to return to work, ostracized from friends and family, subjected to unnecessary and humiliating infection control measures, accused of being lazy or weak, or accused of faking symptoms.
The results are significant because it is one of the first quantitative examinations of stigma in long COVID patients. Researchers hope to refine the questionnaire and test it in other countries.
If you care about COVID, please read studies about Vitamin D deficiency linked to severe COVID-19, and Mediterranean diets could help people recover after COVID infection.
The study was conducted by Ron Damant et al and published in eClinicalMedicine.
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