Almost all respondents (97 percent) agreed that their mood disorder has had a lifelong impact; however, the impact on an acute scale is particularly profound, with 72 percent of respondents indicating that their mood disorder significantly affected their lives in the past month.

Overall, input about wellness priorities, general health, how people experience symptoms, and the impact of those symptoms in the short and long terms reveal a constellation of unmet needs. People living with depression and/or bipolar report experiencing more persistent symptoms than explained by our understanding of the conditions. Although the survey does not provide specific data on these persistent symptoms, we speculate that these symptoms are related to the high rate of open-ended responses that discuss “ability to function,” suggesting that these wellness measures drive the individual’s perception of health and may not be sufficiently mitigated by current treatment approaches.

These symptoms may inhibit people from functioning optimally in life in the ways that are most meaningful to them, such as excelling in work or school, maintaining relationships, and achieving personal goals. Many participants described a decline in overall health coinciding with symptom onset. The gap between what participants define as wellness and their current state represents the potential of research, treatments, and ultimately the ability to identify the most appropriate treatment for the individual.

Through this public survey about depression and bipolar, we gained direct insight from the community of people with lived experience. The finding that a majority of respondents experience both depression and bipolar symptoms challenges clinicians’ traditional practice of diagnosing one or the other, and potentially leaving key aspects of the individual’s experience unaddressed. Furthermore, although organizations such as the World Health Organization have quantified depression and bipolar prevalence by age, recent reports exclude prepubescent children (those under 12) and emphasize increased prevalence in adulthood. These studies may be neglecting a critical period of mood disorder onset, because participant responses indicated that earlier onset corresponds to greater immediate and lifelong impact.

Research priorities were clearly focused on improving treatments, developing precision medicine approaches, and increasing understanding of the underlying physiological differences. Finally, respondents overwhelmingly expressed a desire for an improved ability to function in daily life as a measure of wellness. Overall, this survey reveals the need not only for research to create better paradigms for treatment, but also for efforts to improve current treatment methods, such as better collaboration among practitioners to improve patients’ overall health.

Beyond identifying immediate research priorities for the field, this work also highlights the value of input from people with lived experience, which is often missed in traditional methods of study. The Milken Institute and the Depression and Bipolar Support Alliance will continue to use these insights as they work to guide research, programs, and funding within the mental health community.

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