There’s nothing fake about arthritis and other rheumatic diseases.
Outwardly, Karen Marshall of The Villages looks perfectly healthy. She does not rely on a wheelchair, cane, or walker for mobility. She has no surgical scars or missing limbs.
Inwardly, she copes with an “invisible” illness called Sjogren’s syndrome, an autoimmune disorder that leaves her battling dry mouth, dry eyes, and chronic fatigue. Some fail to acknowledge her disease. In fact, cynical looks and raised eyebrows are common after telling a friend she is not feeling well enough to go shopping or participate in an activity.
Such is life for the 46 million people who, according to the Centers for Disease Control and Prevention, suffer from arthritis and other rheumatic conditions like Sjogren’s syndrome. Rheumatic diseases cause inflammation to the body’s supporting structures: tendons, ligaments, bones, and muscles.
For sufferers like Karen, invisible illnesses can result in invisible friends.
“I’ve lost friends simply because I didn’t feel well enough to do something with them,” Karen says.
There is hope
Arthritis is the leading cause of disability in the country, according to the Arthritis Foundation.
“Arthritis is not just one entity or disease state,” says Dr. Kenneth Stark, a rheumatologist who opened his Tavares-based practice in 1989. “There are more than 100 types of rheumatic diseases. It is important for patients to see a doctor who can distinguish what type of arthritis they have because they are all treated differently.”
Dr. Stark has treated many types of rheumatic conditions, including Sjogren’s syndrome, gout, psoriatic arthritis, lupus, and scleroderma.
Two of the more common forms are osteoarthritis, caused by wear and tear on the joints, and rheumatoid arthritis, an autoimmune disorder where the body’s own immune system attacks joints. Rheumatoid arthritis can cause joint disfigurement and make a mundane task like turning a doorknob impossible.
However, treatment for rheumatoid arthritis has progressed significantly, Dr. Stark says. At his practice, he uses drugs such as low-dose methotrexate, which reduces inflammation and slows the progression of joint damage. One of the latest treatment advancements is biologics, or disease-modifying anti-rheumatic drugs, which specifically target blood proteins responsible for inflammation. The medication can be administered intravenously or through self-injection.
“We’ve come such a long way in the last 30 years in improving quality of life for rheumatoid arthritis patients,” he says. “I’d say the quality of life for rheumatoid arthritis patients has improved by 90 percent. I see fewer patients in wheelchairs or with hand deformities. I see fewer patients who have trouble holding a fork. We prevent patients from becoming totally disabled. We want them to continue working their full-time job or continue enjoying activities such as golf and pickleball.”
In addition to seeking medical treatment, patients with arthritis and rheumatoid disease also can perform gentle exercises at home for pain relief. Dr. Stark cites research conducted by the American College of Rheumatology touting the benefits of tai chi, a mind-body practice that originated in China. He also says that the over-the-counter supplement glucosamine may ease pain for mild arthritis sufferers.
“But before anyone begins an exercise regimen or taking supplements, I strongly recommend that they consult their doctor first,” he says.
Making an invisible illness visible
Karen, who was diagnosed with Sjogren’s syndrome in 2004, serves as support group leader of The Villages Arthritis Support Group. For her, it is disappointing that arthritis, one of the country’s leading sources of pain, often is dismissed as “an old person’s disease.”
“Some medical conditions attract the public’s attention and gain their sympathy,” she says. “Arthritis is not one of them. My goal is to educate people that just because someone looks healthy does not mean they feel well. The more information I can get out to the public, the more they will understand.”
Her support group meets on the fourth Friday at 10am at La Hacienda Recreation Center, 1200 Avenida Central, The Villages. Guest speakers such as rheumatologists, yoga instructors, and nutritionists have provided educational and informative talks.
For members such as Jan Bartok, learning new and effective pain management techniques is invaluable. She suffers from arthritis, secondary Sjogren’s syndrome, and lupus.
“If I go to the grocery store I have to wear gloves because I cannot pick up anything cold,” says Jan, a resident of The Villages. “If I touch anything cold, my fingers turn red then purple and go completely numb. I have chronic fatigue. One activity can completely wipe me out. That’s why I only plan one activity a day. Sometimes I do two but pay for it afterward.”
Attending the monthly support group meeting is one activity she rarely misses. After all, it’s a safe place where she finds strength, friendship, and hope.
“Being around others going through the same thing as me is comforting because we can share advice and ideas and be there for one another,” Jan says. “When you see other people going through the same thing, it reminds me that I’m not crazy. Nobody here judges one another.”
That’s because they know invisible illnesses are indeed very real.