# “I’m Turning to Stone”: Choosing to Live Fully with Scleroderma

Page: https://stenobird.com/podcast/dying-to-tell-you-6678535/i-m-turning-to-stone-choosing-to-live-fully-with-scleroderma
Text version: https://stenobird.com/podcast/dying-to-tell-you-6678535/i-m-turning-to-stone-choosing-to-live-fully-with-scleroderma.md
Podcast: [Dying to Tell You](https://stenobird.com/podcast/dying-to-tell-you-6678535)
Published: 2025-12-11T12:30:00+00:00
Episode link: https://dttypodcast.com/episodes/s3e12-shutes
Audio file: https://mcdn.podbean.com/mf/web/i4e862g9rhnvqx74/S3E12_Shutes_FINAL6cvc9.mp3
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JSON: https://stenobird.com/v1/public/podcasts/dying-to-tell-you-6678535/episodes/i-m-turning-to-stone-choosing-to-live-fully-with-scleroderma
Duration seconds: 3736

## Resource

“I’m part gargoyle is what I tell people. Because I’m turning to stone. I literally am.” Shutes was living the dream—college basketball national champion, Player of the Year, in the best shape of her life—when strange symptoms started appearing. Numbness in her hands. A sore that wouldn’t heal. She was initially misdiagnosed with lupus before a doctor recognized the signs and finally told her the truth: she has scleroderma, a rare and incurable autoimmune disease. Scleroderma causes the body to produce too much collagen, creating a kind of fibrosis that hardens the body from the inside out. As Shutes says with what you’ll learn is her incredible sense of humor—“I’m part gargoyle!” But of course, beneath that humor is the difficult reality of watching your hands curl into permanent contractures, your jaw dissolve, your lungs stiffen to 56% capacity, and food getting stuck in an esophagus that can no longer move it along. In this deeply honest conversation with Cody, Shutes explains the daily and long-term realities of living with this rare and rarely discussed disease, as well as the isolation that persists even when you have community, the relationships that end because people can’t handle your new reality, the exhaustion of coordinating every basic need, and the choice between living safely or living fully. She also opens up about navigating eating disorder recovery while her disease makes swallowing nearly impossible and feeding tubes loom on the horizon. She talks about losing the athlete’s body she once had, the grief of not being able to play basketball with her son, and the intentional choice she makes every day to go hard, crash, and get back up again. Because for her, it’s the living that’s most important. Consequences be damned...or at least accepted. Follow S…

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## Transcript

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