Loving working with people who have PWS: “We need to learn from THEM!”
November 7, 2022
In the latest LivingHealthy with PWS Podcast (PWS University 21), Patrice Carroll and Elizabeth Roof chat with Katrina Kozak about why they love working with the Prader-Willi syndrome population, the importance of buy-in when creating a successful environment for someone diagnosed with PWS, and the significance of empathy versus sympathy.
It is important to listen to what the person with PWS wants and needs, Patrice and Elizabeth agree. “We don’t ask enough – we tell a lot,” Patrice said. In the audio podcast, they discuss the importance of helping someone learn about their interests and abilities and give advice about how to go about these difficult conversations. “Ask questions with a real sense of curiosity,” Elizabeth said.
Patrice and Elizabeth discuss job-seeking experiences with people they’ve worked with. “With jobs… I think we have to be kind of flexible, figure out what’s possible instead of what’s probable – and come up with an alternative path,” Elizabeth suggested. “Helping people with PWS navigate it so you don’t let them get into danger, but you also don’t preclude them from living their dream… and what a sense of purpose it gives them.”
We leave you with wise words from Elizabeth: “Empathy will get you somewhere. Sympathy or pity will just have you spinning your wheels. We need to learn from them.”
