GRAND RAPIDS, Mich. — "I wanted to eat and nourish my bod, but physically, I was getting sick," said Hailey Deptula as she recalls first developing symptoms eight years ago.
In 2017, she was diagnosed with Achalasia, a disorder that affects the ability for food to be swallowed and passed into the stomach.
"We don't really understand why or how it occurs," said Dr. Andrew Chang, a general thoracic surgeon at the University of Michigan who operated on Deptula. "What we do know is that when we look at patients with this disorder, the nerve endings that we would normally see within the muscles of the esophagus are just not there."
Dr. Chang said there's no known cure, and while it is already rare, being diagnosed at 15 is even more unheard of.
"Hailey is really one in a million," said Dr. Chang. "It's often misdiagnosed, because it's not just part of what we think about when we're looking, especially a child who comes in."
Deptula said that back in 2017, she could only find information regarding older adults with the condition, which she found comforting as she says she knew she could still live a long life, but was struck at how little information she could find on pediatric cases.
She had surgery in 2018 that then greatly improved her quality of life.
"Prior to that, though, I was in a phase of life where I essentially was kind of only on liquids," said Deptula.
During this time, she said she first began posting about her condition on social media to act as a "virtual journal" that would help her to look back and reflect on her progress.
Using #Achalasia, however, began something new.
"I use the #Achalasia, and because there aren't a lot of posts about it, I think the algorithm tends to bring my stuff to the top of like a search if someone maybe has received that diagnosis
and they look it up," said Deptula.
Her posts include spreading awareness regarding Achalasia, but also highlighting the importance of patience and self-care when living with an invisible condition, sharing recipes, self-care tips, and lifestyle alterations she has had to make.
She said she began receiving messages from others diagnosed with the condition, and while she does not provide medical advice, providing support and comfort is just as important.
"I think I've connected with almost 40 people now, just being able to say like, 'Hey, here's what it looked like for me,' and, you know, 'Let me hear what you have to share, how's it going for you?' And just kind of making those connections, even if they're very brief," said Deptula.
"Just providing a little bit of comfort for a stranger, it's a really special thing to be able to do."
Her Achalasia has received around 35,000 views on her Instagram and Tiktok @itsanuphailbattle.
"It takes a lot of vulnerability to be open about something like that, especially when the outside world doesn't really see the impact of it," Deptula said.
She is now a graduate student at Grand Valley State University studying to become a speech pathologist. Through social media, she seeks to show that Achalasia will remain a part of her life.
"I still have flare ups frequently, and I still have chest pain and things like that, but your lived experience teaches you so much," Deptula said.
She said she also looks to show that living with an invisible and chronic condition does not mean one can't live a fulfilling life.
"If I could have looked it up and been like, 'All right, like, I can still have a very long and fulfilling life like, this is amazing,' that might have been another source of comfort that I didn't have at the time," Deptula said.
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