The social experience of a condition
Living with a chronic condition involves more than symptoms. It can also involve explaining limitations, responding to disbelief, and deciding what to disclose. Our long-COVID research asks how these social experiences relate to wellbeing. Its starting point is the experience of people living with the condition, not an attempt to reduce their illness to a psychological explanation.
Self-compassion and self-coldness
In a survey of 201 adults with long COVID in Germany, we examined stigma alongside self-compassion and self-coldness. The latter concerns a more critical or harsh way of responding to oneself. The study considered these dimensions separately rather than treating the absence of self-criticism as identical to the presence of compassion. It found associations between stigma, self-relating, and wellbeing.
What the study does not establish
The data were collected at one time point. They cannot determine whether changing self-compassion would improve wellbeing or reduce the effects of stigma. The sample was predominantly female and was not a representative sample of everyone with long COVID. The paper offers evidence about relationships among measured experiences, not an individual prognosis or a clinical treatment recommendation.
Implications and further research
One question for further research is how illness becomes part of identity. A condition may take up different amounts of space in someone’s sense of self, and this may change over time. Bringing identity and self-relating into the same research program could help distinguish meaningful patterns without implying that patients are responsible for their circumstances. Improving social recognition and understanding remains a separate task from studying personal coping.