“It kind of felt like it was just her and I against the world.” – Ann Garner

When a child develops fibromyalgia or another chronic pain condition, it can feel incredibly isolating for the whole family. Parents are trying to understand the condition themselves while also advocating for their child with doctors, teachers, and even extended family members who may not fully believe what’s happening. As a parent without a community, it feels like you’re navigating everything on your own.

For kids living with fibromyalgia, that isolation can be even harder. Their pain is invisible, and they’re quietly managing limitations their peers can’t see. Finding others who really understand that experience can be life-changing. Connecting with people who are on a similar journey often brings community, validation, and hope for the future.

In this episode, Tami is joined by Ann Garner, a Certified Fibromyalgia Coach® and mom raising a teenager with fibromyalgia and ME/CFS, to talk about her family’s experience attending family camp held by the Pediatric Pain Warriors program from the US Pain Foundation. Tami and Ann talk about her daughter Lily’s early symptoms and the long road to receiving a fibromyalgia diagnosis, Ann’s experience as a mother with fibromyalgia watching her daughter develop similar symptoms, the importance of learning to advocate for your child, how Ann discovered the Pediatric Pain Warriors program, what it was like to attend their first camp, how adaptive activities, sports, and support groups create an inclusive environment where kids with chronic pain can feel capable and supported, the strong support network that formed with other families at the camp, navigating the challenge of learning to be authentic about pain, how the camp experience changed Ann’s perspective as both a coach and a parent, why community and shared experience matter so much for families navigating chronic illness, and more.

Note: This episode is not meant to be medical advice. Every person and every situation is unique. The information you learn in this episode should be shared and discussed with your own healthcare providers.

To learn more about the resources mentioned in this episode, visit the show notes.

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