At The Perpetual Caregiver, we’re honoured to highlight an exceptional new episode of the podcast Crohn’s & Autism Awareness Advocate: “The First Woman Documented to Have Crohn’s – With Caregiver Shelly Grimm.” In this conversation, Shelly opens up about supporting her mother—among the first women documented with Crohn’s disease—and how her role as caregiver shaped her life, career, and advocacy. (Episode released Nov 7 2025.) YouTube+1
https://podcasts.apple.com/us/podcast/the-first-women-documented-to-have-crohns-with/id1519243899?i=1000735762616
Why This Story Matters:
Chronic illness often feels hidden, especially when it strikes before the narrative has been built. Here, Shelly’s journey offers a rare glimpse into what it’s like to live alongside a “first” diagnosis—one without precedent, one isolated by the limitations of its time. For the daughter-caregiver, it meant growing up with a silent partner: illness. For us at The Perpetual Caregiver, her story underscores how caregiving begins early, often unrecognized, yet essential.
What You’ll Hear:
- Shelly recalls what it was like to be a young caregiver: helping with the day to day, watching her mother face symptoms no one understood, bearing the loneliness of witnessing suffering without vocabulary or community.
- She reflects on her mother’s diagnosis: being among the first women formally diagnosed with Crohn’s meant fewer doctors who understood, fewer tools to use, and almost no roadmap for life ahead.
- The conversation explores the emotional and practical side of caregiving: balancing one’s own life (school, relationships, ambition) while stepping into a support role; the weight of silence; and the transformation of being a witness into being an advocate.
- Shelly also shares how writing and advocacy became ways to honour her mother’s journey, break the silence, and provide resources for caregivers who often go unseen.
Key Takeaways:
- Recognition matters. When disease and gender intersect, the stories are often incomplete. Acknowledging the “first woman” diagnosis reminds us of the progress and the gaps that still remain.
- Caregiving is multifaceted. It isn’t just scheduling appointments or managing medications. It’s emotional labour, hidden strain, the quiet choices made behind the scenes.
- Self-care is essential. Caregivers must remember that taking care of themselves doesn’t lessen their impact—it amplifies it. Shelly highlights that knowledge, boundaries, and community are crucial.
- Storytelling triggers change. By sharing this journey, Shelly inspires others to speak up, others to listen, and systems to pay attention.
Listen & Engage:
Tune in to the episode (released Nov 7 2025) wherever you listen to podcasts. Whether you’re a caregiver yourself, supporting someone living with Crohn’s or another chronic illness, or simply want to hear a powerful story of resilience, this episode holds value. YouTube
Closing Thoughts:At The Perpetual Caregiver, we believe caregiving is not secondary—it’s central. Shelly and her mother’s story remind us that care transcends diagnosis. It weaves into childhood, identity, relationships, and community. Though her mother’s illness began in an age of silence, their story echoes forward. We invite you to listen, reflect, share, and honour the resilience of caregivers everywhere.
