For years, professional dancer and BYU student Haley Hilton has suffered debilitating migraines, sickness and fatigue without any relief — or good answers as to why — until recently.
After so much unexplained illness, she said, “The day I got my diagnosis
of Lyme disease was the best day of my life.”
Hilton is studying broadcast journalism at BYU. This bright, bubbly, confident and full-of-life girl doesn’t look like she has Lyme disease. However, most of the time she feels like her body is on fire. She is constantly fatigued and almost always has a migraine.
“They call Lyme disease the ‘but-you-look-so-good disease,'” Hilton said. “It’s hard, but if I acted the way I felt, I will eventually succumb to it. I’ve become a really good actor through it all and have learned to live through it and live my life.”
When Hilton was 11 years old, she was diagnosed with Mono and Graves’ disease, or Hypothyroidism, at the same time. Doctors were puzzled because Hilton didn’t look like a child with Graves’ disease. Looking back now, she and her doctors believe she was bitten by a tick around this time, but because she was young and active, her body was able to combat the effects.
In the fall of 2012, Hilton joined Odyssey Dance Theater in Salt Lake City for its production of “Thriller,” dancing eight-hour days. After her shows, she would drive to Provo for evening classes at BYU and be back in Salt Lake to start dancing by 8 a.m. the next morning.
She recalls the day she realized something was seriously wrong with her body.
“Our show ended on a Wednesday, and by Saturday I couldn’t move or get out of bed. I had the worst migraine, and I couldn’t function. It was like I fried the engine,” she said.
It took a year and a half of testing and doctors’ visits, both in Utah and California, to get a proper diagnosis. During this time, Hilton was given several wrong diagnoses and treatment plans. One doctor took a chance and tested her for Lyme disease, an unusual test for a Utah resident because Lyme disease is known as an “East Coast disease.”
Hilton tested positive and since her diagnosis, has been undergoing different treatment regimens to combat the infection. Her current treatment plan is a two-month cycle of medicine administered twice a day through her semi-permanent PICC or IV line. In addition to her IV treatments, she takes pills with every meal and is on a gluten-, soy-, corn-, dairy- and sugar-free diet.
“Treatment is hard and painful. It makes me sick. I have flu-like symptoms. It’s not fun,” she said.
Despite the pain and the treatments, Hilton continues to persevere. She hasn’t let the disease stop her from being social, taking college classes or living one of her dreams.
“Haley has always been a fighter. She is just a 21-year-old girl trying to have fun and be social,” said Vanessa Manwill, Hilton’s friend and neighbor. “There comes a point where she is so exhausted, but she pushes through and always has a smile.”
Hilton recently auditioned for the show “So You Think You Can Dance,” a dream of hers since she was young. She had considered giving up her dream and moving on because she didn’t know if she would ever be healthy enough. However, a month before auditions, Hilton’s roommate and best friend, Lucy Scholl, gave her the push she needed to get on a plane to Los Angeles.
“I told Haley, ‘You keep wanting to be the person who was cured and lived her life, but how about you be the person who lived with it anyway,'” Scholl said.
Hilton had not been in the studio since starting her treatment. Despite this, she choreographed a solo to the music of “I lived,” by One Republic. The song has a message of living life to the fullest, a concept that has taken on new meaning for her. She performed her solo in front of the judges, PICC line and all. She was sent to the next round in Las Vegas.
During training in Vegas, Hilton remembers being exhausted. What should have come naturally was challenging. “It was still so hard, but I know it should have been way worse. I felt sustained through it all,” Hilton said.
Hilton was cut during her time in Las Vegas. However, this isn’t the end for her. She was recently invited onto Good Things Utah to be a part of its feature, “All While in School.” She hopes to bring awareness to Lyme disease as a Lyme disease advocate through her personal blog. She recently started an initiative called “How They Live.” Hilton hopes to highlight other on her blog who are going through difficult circumstances while rising above their challenges and living meaningful lives.
“I am thankful for the opportunity I had to live. I lived in a big way. And now I am ready to live in a way that is less exciting but hopefully just as powerful. I am ready to hopefully overcome my illness,” she said on her blog.
Hilton will continue treatment for the next two months and hopes to return to school at BYU for fall semester. She is confident that one day she will be cured. Until then, Hilton can be found resting at home, blogging and recuperating from her experience on “So You Think You Can Dance.”
