Paper short abstract:

This paper examines the decisions around disclosure made by people with autoimmune diseases. It considers the significance of illness recognition for individuals with invisible illness, and in what ways a 'good life' is made possible through interpersonal relationships.

Paper long abstract:

For people with autoimmune diseases the fluctuating nature of their illness renders the communication of their experience an ongoing challenge. As other researchers have observed, the invisibility of many chronic illnesses means that individuals are able to make decisions about concealing, revealing, and/or disclosing their illness to others. This decision making is often discussed through the framework of risks and benefits, given that disability or having a disease may constitute a 'discreditable identity' (Goffman 1963). This paper proposes that disclosure of illness in interpersonal relationships opens one up to an existential vulnerability; the risk of being denied recognition or being devalued in the eyes of others. Drawing on a dozen interviews with Australian women living with autoimmune diseases conducted as part of a Masters of Research, this paper explores how chronicity is communicated, acknowledged, denied and overlooked in everyday encounters. The difficulty of verbalising the space in between illness and health and being 'sometimes sick' impacts the ability of people with fluctuating illness and episodic disability to communicate their experience, and in turn to receive a degree of understanding and support. Disclosure is not a singular event but an ongoing process that is context dependent, done in degrees, and particular to the relationships in which it unfolds. If the possibility of a good life is tied to the recognition of one's experience by others or to being seen on one's own terms, then it is a possibility that undergoes continual renegotiation.