What changes when a patient advocate becomes the mother of a critically ill child? Julie Croner joins Ursula Mann and co-host Anne-Marie Hayes to share her experiences with psoriatic arthritis, avascular necrosis, complex regional pain syndrome, and melanoma—and how her youngest daughter’s six-month hospitalization gave her a different understanding of caregiving.

Julie reflects on the patient communities that helped her find a path forward, the emotional impact of illness on the whole family, and her work at Health Union helping others turn lived experience into meaningful advocacy.

Highlights With Timestamps

• 00:33 — Meet Julie Croner: Patient leader, mother of four, and the “complex medical mama.”
• 04:40 — Childhood symptoms and the search for answers: Repeated knee surgeries and the difficulty of accepting psoriatic arthritis at a young age.
• 07:19 — Facing avascular necrosis: A devastating diagnosis and uncertainty about her mobility and future.
• 08:43 — Finding the patient community: How online connections offered support and helped Julie discover information about treatment options.
• 11:57 — Becoming an active partner in care: Tracking symptoms, identifying patterns, and sharing her findings with doctors.
• 12:56 — The mental health impact of chronic illness: Depression, panic attacks, and asking for professional support.
• 14:45 — Melanoma and rediscovering herself: An early skin cancer diagnosis, an unexpected singing performance, and the beginnings of her blog.
• 18:30 — Becoming a complex medical mama: Pregnancy uncertainty and her youngest daughter’s early feeding difficulties.
• 21:19 — A medical emergency at five weeks old: Influenza B, pneumonia, and complications that led to two months on a ventilator and six months in hospital.
• 23:34 — Illness affects the whole family: A new understanding of her parents’ caregiving experience and supporting Ellie’s siblings through trauma.
• 25:46 — “It’s just a bad day, not a bad life”: Finding moments of hope during difficult seasons.
• 26:45 — Turning lived experience into a career: Julie’s transition from IT consulting to patient community leadership.
• 29:05 — Recognizing the value of patient expertise: Fair compensation, collective knowledge, and why advocates should not undervalue their contributions.
• 30:28 — Building confidence as a patient leader: A certification resource for responsible storytelling and advocacy.
• 32:21 — Finding joy in family life: Togetherness, new experiences, and a shared love of Disney.

Links and Resources

• Julie’s blog: It’s Just a Bad Day, Not a Bad Life — Her personal story and advocacy journey. itsjustabadday.com
• Social Health Network — A community for patients, caregivers, and healthcare professionals. socialhealthnetwork.com
• Patient Leader Certification Program — Free training to strengthen storytelling, credibility, and advocacy skills. socialhealthnetwork.com
• Patient Voice Partners — Learn more about Amplify and opportunities to share your patient or caregiver experience.

Disclaimer:

The views and opinions expressed by guests on Amplify are their own and do not necessarily reflect those of the podcast, its hosts, Patient Voice Partners, or its affiliates.

Medical Disclaimer:

The content shared on Amplify is for informational and educational purposes only.

Nothing discussed on this podcast—including stories, experiences, perspectives, or commentary from hosts, guests, or contributors—should be interpreted as medical advice, diagnosis, or treatment recommendations.

Always seek the guidance of your physician or other licensed provider with any questions regarding your health, medical conditions, or treatment options.