Living with a rare health condition: the influence of a support community and public stigma on communication, stress, and available support

ABSTRACT

People affected by rare diseases often have limited coping resources and sometimes face stigma. They build communities with others who share their conditions, but not all members may benefit from these communities. This study investigated how adults with a rare genetic health condition (Alpha-1 antitrypsin deficiency; AATD) think about both the Alpha-1 community and public stigma about AATD, and how these cognitions predict their communication responses and well-being. The results showed that people with AATD-encountered stigmatization from various sources. Stronger public stigma predicted more secrecy, more stress, and less available support. Stronger group identification with the Alpha-1 community predicted less secrecy; stronger group activism predicted more available support and more communication to challenge stigmatizers. Post hoc analyses showed significant interactions between public stigma and group cognitions on communication to challenge stigmatizers. Practical implications for bolstering communities to improve the well-being of people with rare diseases were discussed.

KEYWORDS:

• Support communities
• public stigma
• coping
• activism
• group identification

Acknowledgements

The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. We thank Amanda Applegate for her feedback on an earlier version of this paper, two anonymous reviewers for their constructive comments, and Xuan Ma for her assistance with coding. We are grateful to the members of the Alpha-1 Research Registry for sharing their thoughts and experience with us.

Disclosure statement

No potential conflict of interest was reported by the authors.

ORCID

Rachel A. Smith http://orcid.org/0000-0003-2407-7515

Additional information

Funding

This project was supported by the National Human Genome Research Institute [Award number R21HG007111] and by the National Institute on Drug Abuse [Award number P50-DA010075-16].