”Det värsta som har hänt, någonsin” -En kvalitativ studie om myalgisk encefalomyelit-sjukas situation samt om individuellt och institutionellt bemötande

Sammanfattning: In 2020, many Swedes were infected by the COVID-19 virus. The individuals who now suffer from post-COVID conditions have symptoms that resemble the neurological disorder myalgic encephalomyelitis (ME). ME is predicted to increase in the aftermath of the pandemic. Both post-Covid and ME patients commonly encounter misunderstandings, a lack of treatment options and experience difficulties with the Swedish Social Insurance Agency. The purpose of this study is to examine how patients with ME experience their condition to affect the relationships to people in their everyday life and the reception from the health care system as well as the Swedish Social Insurance Agency. The study also examines important factors in coping with the condition. Previous research on the disorder shows difficulties with getting diagnostic legitimacy, a drastically diminished social life, stigma and traumatic experiences with the Swedish Social Insurance Agency. This study is based on six semi-structured video interviews with people who have ME. The analysis of the results has its foundation in Goffman’s dramaturgical theory and his concept of stigma. It further draws on Elias’ and Scotson’s explanation of moral differentiation and Antonovsky’s determining factors of coping with traumatic events. The empiric material shows that having ME leads to a diminished group of friends, which seems to affect the young participants the most. They are also more prone to stigmatization by superficial acquaintances and new contacts. A shared experience among the participants is stigmatization in primary care, which also complicates their encounters with the Swedish Social Insurance Agency. Emotional, practical and financial support make it easier to handle the situation. When needed, it is essential to be able to rest. The situation also becomes easier to handle if the individual is able to create meaning from the new life circumstances.