At first glace, Ashlee Rapoza, 16, doesn’t look sick. But every day is a struggle, as she is living with three “silent” diseases, including chronic fatigue syndrome and juvenile rheumatoid arthritis. Recently, doctors also found a strand of lupus in her bloodstream.
Silent diseases, known as invisible chronic illness or invisible disabilities, produce few or no visible symptoms. Ashlee said they could impact anyone, anytime, at any age.
Her illnesses have forced her to sacrifice the things she loves most, yet she’s doing her best to stay positive and help others who are dealing with the same types of issues. That’s why she will be representing Warwick at the Miss Rhode Island Outstanding Teen pageant at Rhode Island College May 5.
Ashlee, along with the other contestants, must choose a platform, or a cause she plans to advocate for. She decided to present Active Silence, an online support group she formed two months ago that seeks to raise awareness and funds for people living with silent diseases.
“I’m really excited,” Ashlee said of the upcoming pageant, which she estimates will be her fifteenth, as she’s been competing since she was 12. “It’s the biggest pageant I’ve ever done and it’s the one that’s the closest to my heart. I’m representing everyone who is similar to me and has similar issues.”
Regardless of how she places, Ashlee is already making progress on her ultimate goal of spreading news about Active Silence. While it’s still in its infant stages, she’s pleased Active Silence recently gained 135 followers on Facebook. Aside from raising awareness, the page has become a forum for people of all ages to talk about their feelings and social issues they deal with due to their illnesses.
“It’s blown up more than I’ve expected,” said Ashlee. “I’ve had people all over the country come to the page say that it’s really helped them come to terms with their chronic disability or illness. I just want to help people who are like me and explain how we feel.”
The page is also helping Ashlee. It provides a venue to educate people about silent illnesses. She wants others to understand that even though she doesn’t look sick, she is, and it has hindered her lifestyle. One of the most difficult issues she encountered was when some of her classmates at Toll Gate didn’t comprehend why she missed so much school. At times, she felt bullied and isolated.
“I had a lot of problems with kids at school because of that,” she said.
As a member of the National Honor Society, Ashlee unfortunately now has to be home-tutored, per the recommendation of her neurologist. Chronic fatigue syndrome at times makes it hard for her to sit still in class and causes memory loss. Still, she’s remained a straight-A student.
While she said she lost most of her high school friends, her friends from A Triple Threat Performing Arts Center, a dance studio at 2800 Post Road, have been really supportive.
“They all help me any way possible and their parents are amazing,” said Ashlee. “My best friend’s parents sponsored me in the pageant and my team made me a blanket when I was sick. Everyone signed it. And they’re all coming to my pageant, too.”
Ashlee, who has been dancing since she was two, said dance has helped her cope with her medical problems. She’s had to limit herself, but her rheumatologist told her dancing helps with joint pain.
“You can just express yourself on the dance floor and forget about everything,” she said.
But the realization that she can no longer dance the way she used to is difficult. Before getting sick, she took part in competitive jazz and tap, earning awards on the national and regional level. Considering her medical circumstances, she knew her dreams of having a career as a professional dancer were over.
“It was hard at first to accept it,” Ashlee said. “It changed my whole life.”
In time, she was able to come to terms with it. Then, she decided to make a back-up plan: finish high school early, go to law school and become a district attorney.
“Ever since I was little, I was very good at, well, holding an argument, and most of the time I would win,” she said. “In English in eighth grade, we held a little debate and to this day that was my favorite project I ever did in school. I enjoyed it so much I even began reading about law and watching court shows on TV.”
Ashlee’s mother, Marlaina Gauthier Rapoza, artistic director and owner of Triple Threat, said she has never known a woman quite like her daughter. Each day, Ashlee does something to impress her.
“She refuses to let these diseases ruin her life,” Rapoza said. “We just want her to have a normal life and I think she’s doing a heck of a job. I’m very proud of her. She’s a fighter.”
Rapoza, who said Cheryl Cusick, the director of the Miss Rhode Island Outstanding Teen pageant who contacted them and asked Ashlee to represent Warwick in the competition, went on about Ashlee’s other talent, as Ashlee owns a graphic design business, Ashics.
She started by making “fan art,” or depictions of her favorite television shows and actors. After Rapoza saw Ashlee’s work, she asked her daughter to make her an ad for the studio. It wasn’t long before more people began making requests.
“I love making graphics and ads because, just like dancing, it is an art form,” Ashlee said. “I could fulfill my love for the arts through the computer on days that I was really sick and couldn’t go to dance.”
In the future, Ashlee would like to partner with another corporation, But You Don’t Look Sick, an organization similar to Active Silence. She also wants to turn Active Silence into a national-level, non-profit, as well as help raise money for families who can’t afford medical treatment for their children.
“I know from experience how expensive it gets,” she said.
For now, Ashlee is focusing on getting ready for the pageant by eating healthy, training for her interview and living life to the fullest.
“It finally clicked in my mind a couple of months ago that I’m going to have this for the rest of my life, so I need to live every day like it’s my last,” she said. “I really wouldn’t change it if I could.”