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The passing dilemma in socially invisible diseases: narratives on chronic headache
1Department of Education, University of Verona, lungadige porta vittoria 17, 37129 Verona, Italy. cristina.lonardi@formazione.univr.it
Insights
Chronic headache, a socially invisible disease, disrupts patients' lives, impacting identity and relationships. Patients struggle to balance concealing their condition to avoid stigma versus revealing it for support.
Area of Science:
- Sociology of Health
- Medical Sociology
- Chronic Illness Studies
Background:
- Chronic diseases significantly disrupt an individual's life trajectory, affecting identity, self-reliance, and social connections.
- Socially invisible diseases, such as chronic headache, pose unique challenges due to lack of acknowledgment.
- Understanding the lived experience of chronic illness is crucial for developing effective patient support systems.
Purpose of the Study:
- To explore the biographical disruption caused by chronic headache.
- To analyze the process of identity negotiation in patients with chronic headache.
- To investigate the social representation and relational dilemmas faced by individuals with chronic headache.
Main Methods:
- Grounded theory approach applied to qualitative data.
- Collection and analysis of 31 life stories from chronic headache patients in Northern Italy.
- Interviews focused on patients' awareness of objective (disease), subjective (illness), and social (sickness) aspects.
Main Results:
- Chronic headache leads to significant biographical disruption, altering life trajectories.
- Patients face challenges in identity negotiation, impacting the social representation of their condition.
- A vicious circle emerges where patients' choices lead to a partial social representation of chronic headache.
- Patients grapple with the dilemma of concealing the disease (leading to isolation) or revealing it (risking stigma).
Conclusions:
- Chronic headache significantly impacts patients' lives, affecting their sense of self and social integration.
- The social invisibility of chronic headache complicates patients' efforts to gain social understanding and support.
- Addressing the social and relational aspects of chronic headache is essential for improving patient well-being and reducing the burden of the illness.
Abstract:
This contribution concerns the experience of chronic diseases and how it disrupts the trajectory of a person's biography, undermining his/her identity, self-reliance and social relationships. The study focuses particular attention on those diseases which have not yet been fully acknowledged and can, therefore, be considered a socially invisible disease: chronic headache is one of these. Thirty-one life stories were collected from patients attending a specialized headache centre in Northern Italy, and selected in order to include all common varieties of chronic headache. Following the principles of grounded theory, interviews began by adopting a minimal theoretical framework which consisted of asking people how they became aware of the objective (disease), subjective (illness) and social (sickness) aspects of their condition. The analysis highlighted particular points in the patients' life trajectories: first, the biographical disruption that takes place because of the disease; second, how people succeed or fail in identity negotiation, which is vital for developing an acceptable social representation of the disease. Results show that patient's choices follow a vicious circle, where a partial social representation of the disease is produced. People who suffer from chronic headache face a dilemma in social relationships: should they conceal their disease, or make it evident? If they conceal, any possible social representation of the disease is denied, which could lead to carrying the burden of the disease alone, with no social support. On the other hand, making chronic headache visible could result in stigma.
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