Like many 16-year-olds, Destinee Easley considers a perfect day to be one in which she gets to hang out with her friends, maybe spend some time dancing with them or in a Zumba class with her mother, Erica.
But those days are few and far between for Destinee, the sister of Patriots defensive lineman Dominique Easley. Five years ago, Destinee was diagnosed with fibromyalgia, a chronic disorder characterized by widespread pain and often fatigue.
That means there are times when Destinee can’t even get out of bed, unable to go to school or see her friends.
“It’s just really hard to function a lot of times; there’s a lot of times when I can’t even move,” Destinee said recently. “It hurts really bad and sometimes I can’t sleep, my legs are hurting really, really bad.”
Though the National Institutes of Health classifies fibromyalgia as a “common” disorder because it affects an estimated 5 million Americans, it doesn’t get a lot of attention. For unknown reasons, between 80 and 90 percent of those affected are women, though Destinee is somewhat different in that most people are diagnosed in middle age and Destinee was diagnosed at 11.
Back then, she was a cheerleader and dancer as her older brothers, Dominique and David Jr., played football.
Dominique, the Patriots’ first-round draft pick in 2014, has decided to use his prominence to get attention for his sister’s disorder.
First up was a website, EasleysAwareness.com, which shares Destinee’s story and aims to educate visitors about fibromyalgia. Dominique has done interviews with local and national media outlets, always mentioning his sister as he discusses his upcoming season with the Patriots.
Next on the schedule is Champs Camp, later this month at Hormel Stadium in Medford. Easley and teammates Chandler Jones, Jerod Mayo, Aaron Dobson, and Sealver Siliga will take part, and a portion of the proceeds from the camp will go to fibromyalgia research.
Dominique said it was an easy decision to use his burgeoning fame to help his sister.
“Just being at the stage that I’m at can really help bring awareness to the illness,” he said. “If I wasn’t in the NFL, there wouldn’t be the awareness going on that I’m bringing because of the position that I’m in.”
For many individuals with fibromyalgia, it’s a silent struggle. Friends, family, and outsiders can’t see their pain, and some days are better — or worse — than others. Some don’t believe there’s anything wrong with those suffering.
“Going to school is really hard, and I can’t go to school sometimes because I’m homebound and can’t go out with friends because I’m always in pain. It’s hard to have a social life,” Destinee said.
Despite that, “I always have a smile on my face. You’d never know that there’s something wrong with me. Someone might ask me if I’m OK but I don’t show it [and] it’s not like you can see that I’m in pain. It’s inside my body, you can’t see it on the outside, and sometimes people think I’m faking or something.
“I’m always happy so you can’t see that I’m in pain.”
Destinee doesn’t take medications because the ones she has tried didn’t help. A steroid made her body “blow up” and made her feel worse. Now she takes only vitamins.
The siblings come from a military family — their father, David, did tours in Afghanistan and Iraq when Dominique was in middle and high school — and not betraying their emotions is something they come by naturally.
“We are all the same; it would be hard to tell that we were going through something,” Dominique said. “You don’t complain about just anything, that’s not in our blood to complain about things like that.”
Destinee is grateful to her brother that he has made it his mission to not just bring awareness to fibromyalgia, but also for his goal of funding research in the hope of finding a cure. If that day comes, Dominique would also like to help pay for travel to treatment for those who can’t afford it.
In the meantime, Destinee inspires her brother.
“That’s my baby sister. Seeing her go through pain every day and not be able to walk or even get out of bed sometimes, I have no excuse to say that I can’t do something,” Dominique said. “She’s been fighting since she was 11. It’s really more of a motivation for me.”
And even with so many more questions than answers when it comes to her disorder, Destinee simply focuses on the positive.
“I just think that I’ll get better. I don’t have any anger toward anything,” she said. “I’m in this situation, it’s hard sometimes, but I know I’ll come through.”Shalise Manza Young can be reached at email@example.com. Follow her on Twitter @shalisemyoung.