Understanding Rare Conditions: The Compounding Impact, Interwoven Nature of Mental Health Concerns
Due to the nature of their conditions, people living with rare diseases experience a wide, endless range of emotions and feelings, including sadness, grief, shame, loneliness, jealousy, anger, shock and emotional numbness. These feelings are not always prioritized the same way physical condition symptoms are, but they can be just as impactful.
Mental health concerns can arise at any point throughout the patient journey, such as before and during diagnosis, as a trigger to physical symptoms, as a result of condition symptoms or in response to various quality of life changes.
Regardless of when and how they are experienced within an individual’s patient journey, findings from Health Union’s surveys of its rare condition communities show mental health concerns, and their impact, are pervasive. Here are a few data-driven examples:
