What happens after diagnosis? : understanding the experiences of patients with newly-diagnosed bipolar disorder

Bipolar disorder is chronic condition involving episodes of both depression and elevated mood, associated with significant disability and high relapse rates. Recent estimates suggest a lifetime prevalence of 5%. Little is known about the subjective experiences of patients after receiving a diagnosis of bipolar disorder, and the impact of these experiences on patients’ willingness and ability to work with their health professionals to find the most effective combination of treatments and to set up self-management plans. Objective: This paper describes a qualitative study exploring the experiences and difficulties faced by patients after they have received a diagnosis of bipolar disorder, as expressed online to expert patients trained to provide informed support. Design: Qualitative study. Setting: Online communication within a public health service setting. Participants: Twenty-six participants with recently-diagnosed bipolar disorder communicated online with Informed Supporters, people who had been managing their bipolar disorder effectively for 2 years or more, as part of an online psycho-education programme. Results: Participants cited unwanted side-effects of medication, coping with unpleasant symptoms, positive and negative reactions to the diagnosis, identifying early warning signs and triggers of the illness, the loss of a sense of self, uncertainty about their future and stigma as issues of major importance after diagnosis. Conclusions: Personal concerns and difficulties following diagnosis can undermine effective treatment, thwart self-management efforts and interferewith effective functioning. Such data are important for clinicians to take into account when they work in partnership with their patients to fine-tune treatments and help them set up self-management plans.