She was only nine years old, which is young to get a double-whammy diagnosis of fibromyalgia and Chronic Fatigue Syndrome (CFS), but California hairdresser Ashley Jael now looks back on her nearly 20 years of coping with both diseases as a mixed deal—not entirely negative.
“I’ve come to think that my condition has made me who I am and has given me empathy to relate to other people,” Jael says. “I used to think it robbed me of my childhood. I couldn’t do everything kids do—for example, I couldn’t spend the night at sleepovers, because my parents would have to come get me. But now I see that it’s allowing me to help other people. I can relate to whatever they’re going through; I can encourage them.”
The medical community considers CFS and fibromyalgia to be related, and Jael assumes in her case the cause is genetic since her mother was two years ahead of her in receiving the same double diagnosis. Both diseases cause exhaustion and interrupted sleep, while fibromyalgia also triggers joint and muscle pain. Jael believes that a serious car accident a few years ago worsened her condition, and it doesn’t help that she gets up at 7 a.m. some days to take kid clients at Pigtails and Crew Cuts in San Marcos.
“On days I work long hours, I really feel it!” Jael says. “My ankles, knees, back—if your whole body aches and you’re not getting enough sleep, it’s a hard combination!”
Fibromyalgia also heightens sensory responses, and Jael counts food allergies and food sensitivities among her symptoms.
“The healthier I eat, the better I do,” she observes. “Fruits and vegetables make my body feel better. I’d rather eat well than take a lot of medications, which can have side effects. I try to stay as natural as possible.” Jael takes only a capsule of turmeric twice a day to ease pain and a daily multivitamin. Her exercise tends to be limited to walking, since a more rigorous workout leaves her tired and aching.
“Recently I went paddle boating for the first time,” Jael reports. “It was fun! I was having a good day, but afterward I was sore for a week. I always plan a day to recuperate from any strenuous activity. I don’t go hiking unless I know that I have a day or two to rest before going back to my routine.”
Currently taking courses toward a bachelor’s degree in theology, Jael hopes to use her hair and makeup skills to fashion a career that teaches young girls how to empower themselves and raise their self-esteem. She’s begun to build a following with her blog, Ashley Jael Styling, about the struggles associated with inner and outer beauty. She knows how hard it can be to talk about these issues.
“At my lowest point, I was overwhelmed and I shut everybody out,” Jael says. “I tend to be more of an introvert anyway, and I didn’t want to talk about my illnesses because I didn’t want to deal with them. I became closed off to everything except the voices inside my head. I had thoughts about self-affliction or driving off the side of the road. That’s when you need a change of perspective, and you need someone to help you. I’m a Christian, and my faith helped me tremendously. I’d pray about what I was going through. Once I started talking to people, they made me see that my thoughts were not reality. People who are struggling with depression should talk about it.”
Meanwhile, Jael is an active advocate of spreading awareness about both CFS and fibromyalgia. Consumer Health Digest featured her in a story about her illnesses.
“A lot of people my age have never even heard of my illnesses,” she says. “We all have our struggles. We need to support each other.”