))
Pockets Of Joy After Diagnosis
Manage episode 523285605 series 3407225
What happens after the diagnosis, when the pamphlets end and real life begins? We open up about the messy middle: the anger at being dismissed, the relief of finally being believed, and the slow turn toward joy that doesn’t deny pain. Our conversation traces the path from confusion to clarity, showing how better information, kinder self-talk, and small, repeatable habits rebuild a life that feels like yours again.
We share the moments that changed our mindset—an elder’s “move it or lose it” mantra that reframed activity, the first time a mobility aid left the car and came into the store, and the day we stopped hiding illness from kids and watched them respond with curiosity instead of judgment. You’ll hear how we adapt movement without glorifying push-through culture, why rest counts as progress, and how nutrition and pacing become tools instead of punishments. We talk about the evolving medical landscape too: more education at diagnosis, clearer care plans, and the power of finding professionals who speak chronic illness fluently.
If you’ve ever felt too young to be this sick, if you’ve been told you’re “just tired,” or if you’ve wondered whether joy still fits in a body that hurts, this episode is for you. We offer practical ways to find pockets of joy during flares, use mobility aids without shame, and measure wins in consistency rather than intensity. The mountain isn’t only the illness—it’s learning to climb with better maps, truer friends, and a voice that says you still get a full, worthy life.
If this resonates, follow the show, share it with a friend who needs a little hope, and leave a quick review so others can find it. Your story might be the umbrella someone else needs.
Keep your spoons close and support system closer.
Support:
https://rarepatientvoice.com/Myspooniesisters/
https://www.etsy.com/shop/MySpoonieSisters
https://www.graceandable.com/?bg_ref=980:nzTyG6c9zK (Use code GAJen10)
Website: https://myspooniesisters.com/
Discount Codes: GIANT Microbes | Gag Gifts, Teacher Gifts, Doctor Gifts, Gifts for Girlfriends and Boyfriends code SPOONIE20 for 20% off
Chapters
1. Beyond Diagnosis: Setting The Tone (00:00:00)
2. From No Info To Empowerment (00:00:47)
3. Mindset Then Versus Now (00:01:21)
4. Pockets Of Joy: Stories That Shifted Life (00:02:31)
5. Move It Or Lose It (00:03:43)
6. Adapting Activity To Your Body (00:05:06)
7. Relief, Anger, And Being Believed (00:06:37)
8. Stigma, Aids, And Owning Visibility (00:08:24)
9. Kids Notice Care, Not “Sick” (00:10:39)
10. Advice To Our Younger Selves (00:12:51)
11. Joy Beside The Sad (00:16:37)
12. Closing And What’s Next (00:17:25)
166 episodes
Share
