Out in the Open

How a young woman who can't eat found purpose beyond food

Michaela Shelley has a medical condition that makes her unable to eat. In a culture that revolves around food, she's had to find other ways to connect.

Helping fellow teens who can’t eat leaves Michaela Shelley feeling full

Michaela Shelley (L) had a hard time finding people her age who understood what she was going through, so she created an online community for teens with feeding tubes. (Submitted by Michaela Shelley)

Michaela Shelley was 14 years old when her body began rejecting everything she ate. 

"I was placed on a feeding tube and I had to stop eating all food," Shelley told Out in the Open host Piya Chattopadhyay. 

"Several months later, I stopped tolerating the formula that I was being given through my feeding tube and my entire digestive tract just shut down."

The South Carolina woman, who's now 20, has multiple chronic illnesses that affect her digestive system, her immune system and her heart. She also has mitochondrial disease – a genetic disorder which affects her body's ability to function.

Today, a tube delivers nutrients directly to her heart through an IV into her veins and arteries. All these health issues mean she expects never to eat food again.

"It was something that I struggled with really, really badly," said Shelley.

Confronting a world that revolves around eating 

Michaela Shelley (L) and a friend in hospital. (Submitted by Michaela Shelley)

As a teenager, Shelley often wanted to go out with her friends to the movies and dinner, but her inability to eat complicated things. 

"I can go, but I can't eat the popcorn. Or I can go on a dinner date, but I have to sit there and watch you eat," she remembered. "I wanted to be just like everybody else and I couldn't."

These days, Shelley avoids activities that revolve around food by finding alternative ways to spend time with family and friends. For Thanksgiving, her family doesn't have a big turkey dinner. Instead, they go to the movies. 

"We spend the entire day, or morning at least, at the movie theatre," said Shelley. "That's a way we bond. We don't bond over food ー we bond over movies." 

But other members of her family still have to eat. While her mom is cooking dinner for her siblings, Shelley finds ways to avoid the smell of food.

"I would go take a shower," she said. "I could learn a way around the differences that I had to face."

Feeling fulfilled without food

Michaela Shelley and her younger brother are both unable to consume food due to health conditions. Their two other siblings can eat food. (Submitted by Michaela Shelley)

When Shelley first got her feeding tube, she felt alone because she couldn't find a community of people her age that were going through similar challenges. 

"I was so frustrated and angry and none of it made sense," she said. "There's no [community] for people my age."

Shelley took matters into her own hands by creating a support group for teenagers and young adults with feeding tubes. It's a space to share coping strategies, exchange advice and provide a support system for one another. Nearly seven years later, she says the group has helped more than 500 young people from nearly 20 countries.

"It's just a place for you to know that you're not alone," she said.

It's also a place where Shelley was able to find herself again.

"I felt like I lost everything about who I was and I had to find a way to learn how to rebuild and repair myself," she said. "The support group was the way that I did, because I was able to help other people."

"I feel like that has been so fulfilling for me. To say: I am making a difference in someone else's life," Shelley added.

This story appears in the Out in the Open episode, "Feeling Full."


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