Becoming comfortable with “my” epilepsy: Strategies that patients use in the journey from diagnosis to acceptance and disclosure

- Becoming comfortable begins by processing sentiments felt after epilepsy diagnosis.
- Useful strategies were used such as seeking information and joining support groups.
- Being comfortable was constructed as a casual, open, and positive frame of mind.
- This process was an important step before being ready to disclose their epilepsy.

ObjectiveProponents of resilience theory have highlighted the importance of understanding the processes of resilience. The objective of the study was to explore how people with epilepsy reach a stage of being comfortable with their epilepsy. Identifying the processes used is important to developing effective self-management for people who are newly diagnosed with epilepsy.MethodA grounded theory approach involving forty-nine consenting adult people with epilepsy (18 years and over), was used to explore their first-hand experiences of coming to terms with their epilepsy. Data were collected using one-to-one interview to elicit in-depth personal accounts of people with epilepsy's experiences of adjusting to their diagnosis of epilepsy. Using grounded theory's systematic inductive-deductive process data of analysis, the core findings that emerged from the open coding and inductive phase were analyzed independently by two researchers to ensure that findings were verified and validated across the interview dataset.FindingsThree core categories emerged as central to the journey that people experience after receiving their diagnosis of epilepsy towards becoming comfortable with their epilepsy. These were: i) meaning of “my” epilepsy diagnosis, to capture people with epilepsy's feelings, reactions and concerns after being diagnosed with epilepsy, ii) useful strategies, to identify what people with epilepsy did to become comfortable with their diagnosis, and iii) being comfortable with my epilepsy, to account for the frame of mind of people with epilepsy when they reach a point of accepting their diagnosis.DiscussionThe findings provide important insights into the personal experiences of people with epilepsy after receiving their diagnosis and identifies a range of strategies they find useful in helping them reach a position of acceptance and being 'comfortable with my epilepsy'.