Episode
226: Should I Be Raising Awareness About My Child’s Diagnosis?
- Podcast
- The Rare Life
- Published
- May 14, 2026
- Duration seconds
- 2892
- Processing state
not_requested
Actions
POST https://stenobird.com/v1/public/podcasts/the-rare-life-1239619/episodes/226-should-i-be-raising-awareness-about-my-child-s-diagnosis/transcription-requests
Idempotently request low-priority transcript generation for this episode.GET https://stenobird.com/podcast/the-rare-life-1239619/226-should-i-be-raising-awareness-about-my-child-s-diagnosis.md
Read the agent-friendly Markdown representation of this episode resource.
Summary
For many parents of disabled and medically complex children, “raising awareness”, especially on social media, can start to feel like another responsibility sitting on top of an already overwhelming life. Post more. Educate people. Share your child’s diagnosis. Explain disability better. But what actually changes when we do that… and what are we giving up in the process? In this episode, Alyssa and Madeline explore the tension many caregivers feel between wanting the world to better understand disability and wanting to protect their child’s privacy, energy, and family life. They talk about awareness versus advocacy, the pressure social media creates to constantly educate others, the guilt parents carry when they don’t share publicly, and how many families’ relationships with awareness evolve over time. If you’ve ever wondered whether sharing your child’s story is helping, hurting, healing, or just exhausting, this episode will give you a lot to think about. Links: Fill out our contact form to joinupcoming discussion groups! Join The Rare Life newsletter andnever miss an update! Listen to Ep. 100: Raising Awareness | DisabledChildren Don't Owe Society Anything! Listen to Ep. 219: Handling Questions fromStrangers About My Disabled Child! Follow us on Instagram @the_rare_life ! Donate to the podcast or Contactme about sponsoring an episode.