Girl dubbed the ‘mystery patient’ tells story of growing up with chronic invisible pain

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(Photo Credit: Julie Mills via Twitter)

(Photo Credit: Julie Mills via Twitter)

REXBURG, Idaho — It started in her back – paralyzing pain that sprang from seemingly nowhere.

Growth pains perhaps? Her mother wondered.

At 15 years old, Julie Mills found herself in a swimming pool, exercising with the old people.

“The old people would ask me why I was there,” Mills said. “I told them I had back pain and they told me I was too young. That killed me. … I think those were the moments where I was like, why? All of these people can see that this shouldn’t be happening to me, so why is it?”

The pain spread to her jaw, then her knees, then her hands.

Diagnoses and doctors came and went. Dubbed the “mystery patient,” Mills kept her pain-filled struggle under the radar for years.

“I was vocal until I realized that people didn’t believe me,” she said. “I would tell people I was in pain, but there was no physical sign I was in pain. I wasn’t on crutches; I was wearing a back brace but a lot of people couldn’t see it.”

Mills’ mother, Callie Hatch, said it has been an interesting journey, dealing with an invisible pain that is easy for others to forget.

“For one who’s not experiencing it firsthand, it’s kind of frustrating,” Hatch said. “It’s like, ‘well, you were fine yesterday.'”

Despite trying several medications for her various diagnoses, Mills’ unobservable condition did not improve. She visited a new doctor in hopes that he would finally be able to take the mystery out of “mystery patient.”

In June 2014, twenty-one-year-old Mills, now a student at Brigham Young University-Idaho studying public health, was diagnosed with the unthinkable: rheumatoid arthritis.

“At first I remember being like ‘No way – this isn’t real,'” Mills said. “I remember staring at my hands for like a week, just fearing what was going to happen to them. It was probably the scariest moment of my life.”

Initially the embarrassment kept her from sharing the fact she had rheumatoid arthritis. Outside of her family circle, only about five people knew about the diagnosis.

That changed months later when Mills read aloud a paper she wrote on Rheumatoid Arthritis to her peers in a sport’s training class at BYU-Idaho. The students who presented were supposed to say why they picked the topic they did.

“(I said,) ‘This topic was interesting to me because I have rheumatoid arthritis,'” Mills said. “Every head that was looking down shot up and looked at me. I’ve never seen that in a college class before; there are always like five people’s heads down, looking at their phones.”

The class’s reaction brought her to the realization that people are often unaware of what others around them are going through.

“As time kept going on, I just kept having feelings [that I] should share with other people,” she said.

After opening up to the rest of the world via Instagram that November, Mills decided it was time to record her experience in a more permanent way by connecting with an editor at Creaky Joints, an arthritis foundation who quickly picked up her new blog.

“I was initially worried she might dwell on it more than she would otherwise when writing about it, but it’s actually had the opposite effect,” Hatch said. “She’s recognizing that she put herself out there as a role model, and she wants to be a positive role model.”

Mills, who has always enjoyed writing, said she contacted Creaky Joints because she wanted a voice that would enable her to connect with the arthritis audience, both young and old.

“Just to be able to get my story out there is so awesome and fun, and I’m so thankful that people read it,” Mills said. “Even if they didn’t read it, I love to get my feelings out there so that someday if one person comes across it and they need it, they have that.”

Throughout this journey, Mills’ family – especially her husband, Jake – has never allowed her to feel sorry for herself, something that has made her pick herself up and keep going when times are hard.

“It’s important, most of all, to be happy and grateful,” Mills said. “I’m so grateful that I have a body, that I get to live this life, and that I get to share it with people. A lot of days it hurts, but it’s so worth it.”

To learn more about Mills’ story, click here. For her Twitter account, click here.

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