# 226: Should I Be Raising Awareness About My Child’s Diagnosis?

Page: https://stenobird.com/podcast/the-rare-life-1239619/226-should-i-be-raising-awareness-about-my-child-s-diagnosis
Text version: https://stenobird.com/podcast/the-rare-life-1239619/226-should-i-be-raising-awareness-about-my-child-s-diagnosis.md
Podcast: [The Rare Life](https://stenobird.com/podcast/the-rare-life-1239619)
Published: 2026-05-14T15:11:24+00:00
Episode link: https://podcasters.spotify.com/pod/show/the-rare-life/episodes/226-Should-I-Be-Raising-Awareness-About-My-Childs-Diagnosis-e3jc9l1
Audio file: https://anchor.fm/s/22c0499c/podcast/play/119989345/https%3A%2F%2Fd3ctxlq1ktw2nl.cloudfront.net%2Fstaging%2F2026-4-14%2F6192dfef-c59c-d111-8dd3-e5fef40bb2db.mp3
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JSON: https://stenobird.com/v1/public/podcasts/the-rare-life-1239619/episodes/226-should-i-be-raising-awareness-about-my-child-s-diagnosis
Duration seconds: 2892

## Resource

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.

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## Transcript

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