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SALT LAKE CITY — Jessica Turner is battling what she calls a "soul-threatening" disease.
Chronic fatigue won't kill her, but the associated pain and general malaise sometimes leaves her feeling like she might be better off dead.
"The illness is so isolating," she said. "My body is broken and nobody knows what to do about it."
Turner, of Cottonwood Heights, is one of hundreds, if not thousands of Utahns who brave each day, juggling traditional and alternative medicine techniques just to feel human. Many of those people, including patients, family members, caregivers and others, gathered in Salt Lake City on Saturday to learn more about their illness and what they can do about it.
The local Organization for Fatigue and Fibromyalgia Education and Research hosted the half-day conference, with Dr. Elizabeth Unger, chief of the chronic viral diseases branch for the U.S. Centers for Disease Control and Prevention giving the keynote address.
Chronic fatigue syndrome is a debilitating multi-systemic illness. It's way more complicated than just fatigue.
–Dr. Elizabeth Unger, chief of the chronic viral diseases branch for the U.S. Centers for Disease Control
Unger said chronic fatigue and fibromyalgia are severely misunderstood and appropriate resources to help treat or deal with the illnesses are sparse, if at all available in most areas.
"Chronic fatigue syndrome is a debilitating multi-systemic illness," she said. "It's way more complicated than just fatigue."
The CDC is working on updating available research on the subject, hoping that it can help guide the discussion for physicians and those who suffer, and potentially lead to future breakthroughs in treatment. It has enrolled seven treatment clinics across the nation, including one in Salt Lake City, where patients are helping with the surveillance effort.
"It's a really, really complex illness, not just a single mutation or environmental factor," Unger said, adding that the medical conditions have been shown to impact and be affected by the brain, central nervous system, immune system, diet and lifestyle, as well as genes, and more.
She said the levels of fatigue, sleep disturbances and pain reported by chronic fatigue and fibromyalgia patients are often worse than those of patients suffering multiple sclerosis, muscular dystrophy and post-polio syndrome, which have similar symptoms.
Unger's studies have revealed that only about 20 percent of people who meet the criteria for either chronic fatigue or fibromyalgia are ever diagnosed, which she said makes it difficult to help the people who need it.
"It's a public health objective to reduce morbidity and help people have a better life," Unger said. "There's still a lot of misunderstanding of the illness."
Friends, family and caretakers of people who suffer with the illnesses said they often feel trapped, can't plan for anything or fear for leaving their loved ones alone. They spoke confidentially during a session of the conference, seeking help from others who share similar issues.
The Organization for Fatigue and Fibromyalgia Education and Research exists to not only provide help to patients, but educate caretakers and become a network of support for anyone with questions about the illnesses.
Despite her debilitating illness, Jessica Turner, 30, has finished high school, married and given birth to two children — and now those children, ages 6 and 2, are learning what it is like to help care for their mother from a very young age.
"I have parents who love me, children who think the world of me, neighbors who watch out for me and a husband who cherishes me," she said.
I have parents who love me, children who think the world of me, neighbors who watch out for me and a husband who cherishes me.
–Jessica Turner
Most of her days are spent lying in bed, with undertones of pain ringing throughout her whole body. She said it is like "driving on the freeway in second gear."
Since her diagnosis at age 20 (four years after she first felt symptoms), Jessica Turner said she wasn't going to let chronic fatigue take over her life. While her heart could handle 10 babies, she said she is sticking with two kids at the moment, which gives her husband who also works full time plenty to do.
Jonathan Jay Turner isn't resentful of the situation he's in, he said. He chose it, knowing full well that his life with Jessica Turner wouldn't be "typical." "Some days I want to fall down, too," he said. "In my plan for life and how I want it to turn out, this is just a speed bump in the road."
Both are hoping the illness receives more credibility and while they can't give money toward much needed research — they live in the basement of her mother's home — they give their time and volunteer to help others learn about the condition that changes their lives day in and day out.
"He doesn't just do the bare minimum for me," she said. "He knows if he backs off with his expectations of me, the moments I can be up will be better."
The couple has a full-time nanny in their home, allowing Jessica Turner a chance to mingle with her children when she is physically and mentally able. Emotionally, she said, she can't deal with the kids all the time, "but I cherish and love the moments I get."
"It has surprised me how much it gave me purpose in life to have them," Jessica Turner said.
The family credits the illness for bringing them closer together and forcing them to spend time together, as they can't go out much due to financial and physical limitations caused by chronic fatigue.
"It's hard to think that I might not ever improve," Jessica Turner said, adding that such thoughts lead to despair. "Somehow, little miracles happen and you keep going."
