More Than a Sibling: A Workshop for Unheard Voices

Siblings in families affected by rare diseases often have their voices go unheard. On July 5–6, the Rare Disease Welfare Center (RDWC) hosted its first two-day workshop designed specifically for siblings—aged 16 to 40—of individuals living with rare diseases. The workshop aimed to help participants alleviate emotional stress, recognize their intrinsic value, and strengthen their sense of self.

Counselor Hsieh Chia-Ying observed that many siblings of rare disease patients have grown accustomed to concealing their true feelings or suppressing their own needs, often shifting all attention to their affected sibling. Through guided life-story sharing focused on their personal experiences, many participants found, for the first time, a space to fully express their own journeys—rediscovering that “I am not just someone's brother/sister; I am my own person.”

One participant reflected, “Very few people around me understand the challenges and emotional struggles that come with having a sibling with special needs. Often, I’ve had to cope quietly on my own. But through the counselor’s guidance, I finally experienced a rare sense of release and self-discovery. Hearing others share their highs and lows made me feel deeply that I’m not alone.”

Through dialogue and mutual support, the workshop enabled these siblings to regain the courage and strength to move forward—while also learning to honor their own needs. As they left the RDWC that day, participants not only took with them newfound insights but also crossed inner emotional barriers they had carried for years. May every sibling find their own light and path forward.

Translator: David Lee (Becker Muscular Dystrophy)