Jenny Clark and Connie Dickey have a lot in common.
They both live in Blount County - Clark in Maryville and Dickey in Friendsville. They are full-time moms who are constantly on the go with their children. They met when their daughters took dance at the same studio in Maryville. They are young, active women accustomed to staying fit.
And they both suffered from misdiagnosed, debilitating ailments for years before being correctly diagnosed with chronic Lyme disease.
Clark and Dickey joined forces to present a screening of the documentary “Under Our Skin,” which examines the tick-borne disease that has polarized the medical community. The film will be shown at 7 p.m. Thursday, April 21, at the Regal Downtown West Cinema 8 in Knoxville.
Andy Abrahams Wilson, director of “Under Our Skin,” will speak after the screening. Wilson, who grew up partly in Knoxville, is flying in from his home base in Northern California for the event.
Clark and Dickey hope that the award-winning film will help educate viewers about Lyme disease. They have had a lot of luck in pulling the screening together, but they’ve worked hard to make it happen.
“It’s worth it, if we can help one person get out of pain and start the journey back,” says Dickey.
Lyme is a disease whose symptoms mimic those of several other illnesses. Clark recalls being bitten by a tick 14 years ago, but she didn’t show any signs for years. It was only after she started having children that her body began falling apart. In 2007, soon after she’d had her fourth child, she was barely able to walk.
Her escalating list of symptoms ranged from numbness in the extremities to tremors to migraines to cognitive issues.
“When I looked up a lot of these symptoms on my own, a lot of them point to ALS,” she says. “Lou Gehrig’s disease is like a death sentence. It was very scary.”
One doctor told her she needed to see a psychiatrist.
“At that point you’re like, ‘You’re fired,’” says Clark. She finally was diagnosed with multiple sclerosis.
“I didn’t really want to accept that,” she says. “I’m more of a researcher. Not that I don’t trust the medical system, but … I’m more of the type to go get a second opinion before just accepting what they say.”
Dickey went through a similar experience. She remembers having what looked like a bug bite after jogging one day in 1997. Symptoms that got progressively worse after the birth of each of her three children included spinal pains, migraines and drenching night sweats. Her doctors told the petite woman to quit carrying her babies around. They told her she had arthritis in her spine and nothing could be done about it.
Later, an infected gall bladder was fingered as the culprit; doctors removed her gall bladder. It didn’t help. She was told to have physical therapy to relieve her herniated discs; the pain got worse. Finally, she was diagnosed with fibromyalgia. In 2006, after the treatment elicited no improvement and she was still in agonizing pain, she mentioned Lyme and pressed her doctor for answers. He advised her to visit a psychiatrist.
“My internist said, ‘There is no Lyme disease in Tennessee,’” says Dickey. “There’s a lack of physician education about the presence of Lyme disease in Tennessee.”
Clark and Dickey had to travel out of state to find a doctor who didn’t buy into the theory that Lyme disease is limited to the Northeast. Dickey feels normal again after having “eight months of arduous treatment.” Clark is better but still has some symptoms.
Wilson’s twin sister had Lyme that went undiagnosed for a long time, and he thought she was just whining. It wasn’t until a friend in Northern California was diagnosed - after being diagnosed first with MS and then ALS - that he realized that his twin’s pains were real.
“I was shocked that Lyme disease could be so serious, and I was shocked that it could be in California,” he says. “As I began to look more into it, what I uncovered was an untold number of people who were going undiagnosed and untreated and told that it was all in their head.”
That discovery led the filmmaker to begin working on “Under Our Skin,” which took him four years and yielded about 400 hours of footage. The documentary debuted at the Trebeca Film Festival in New York in 2008 and had a limited theatrical release in 2009, but he’s still traveling the country to speak at community screenings. He’s never become this involved with any of his other films.
“I don’t know if I ever will,” he says. “This has really been very special that way. I’ve become very close to a lot of the people in the film or surrounding the film.”
“Under Our Skin” tickets are $5. For info, email Clark at TN.Tick1@gmail.com or Dickey at TN.Tick2@gmail.com.