Episode 092 - You Are Not Alone: Mental Health and Peer Support in Rare Disease

Welcome to Episode 092 of the Beyond the Diagnosis podcast! In this episode we’re exploring the often-overlooked mental health impact of rare disease across every stage of the journey, from the uncertainty before diagnosis to treatment, remission, and beyond. Licensed social worker Doris Dahdouh joins us to discuss the emotional realities patients, caregivers, and siblings face, including anxiety, grief, guilt and isolation, while offering practical ways to cope through clear communication, intentional support, daily routines, gratitude, and peer connection. The conversation is compassionate, validating, and deeply practical, reminding listeners that feeling overwhelmed is normal and that no one has to navigate rare disease alone. Let us know what you think! Leave us a review, drop us a comment or share an idea for a future podcast with us at [email protected].   Take a screenshot and tag us @histiocytosis_association on Instagram. We’d love to hear your feedback!  Be sure to subscribe so you can be notified the moment a new episode of Beyond the Diagnosis is released.   Resources mentioned in the podcast: Learn more about our Peer Support Groups at www.histio.org/resource-overview/peer-connection Follow the Histiocytosis Association on social media: Facebook: https://www.facebook.com/histio Twitter: @histiocytosis Instagram: histiocytosis_association YouTube: https://www.youtube.com/@Histiocytosis  Music: “Heroes” by Noah Smith