Nov. 6, 2008 -- Nine-year-old Jacob Martin of Dracut, Mass., has trouble sitting still during group time in class.
At first glance, this may not seem out of the ordinary. But while Jacob appears to be a typically restless fourth-grader, his experience stems from a condition that is more commonly associated with his grandparents. Jacob has arthritis.
Jacob's legs stiffen and swell as a result of polysystemic juvenile rheumatoid arthritis, a kind of arthritis that causes damage to numerous joints and tissues in children. But his mother Joanne Martin said he refuses to tell his teacher that he feels uncomfortable and endures the pain anyway.
"Anytime the situation comes up, I tell him it is OK if the other kids know," Martin said. "But he doesn't want to be the center of attention."
Jacob is one out of an estimated 294,000 children in the United States who have been diagnosed with a rheumatologic condition, according to a 2007 study by the U.S. Centers for Disease Control and Prevention in Atlanta. And, like Jacob, some children choose to keep silent about their diagnosis.
The exact causes of juvenile arthritis remain unclear, but researchers believe that like its adult counterpart, the condition arises when the body's immune system malfunctions, damaging the body's own tissues. In many cases, effective treatment is available in the form of anti-inflammatory medication, physical therapy and exercise.
But unfortunately, while children were once thought to outgrow the condition, evidence suggests that the disease may recur and endure long into adulthood, said Dr. Egla Rabinovich, co-chief of pediatric rheumatology at Duke University in Durham, N.C.
Lying to Keep the Secret
Although some of these children use secrecy as a tactic to feel normal, Rabinovich said, those who keep it to themselves may, ironically, find themselves feeling socially isolated.
"Kids can be very secretive about their diagnosis," Rabinovich said. "They may lie to their friends about why they cannot participate in physical activities, and eventually one lie can lead to the next lie."
Dr. Robert Sundel, director of rheumatology at Children's Hospital Boston, said parents should leave it up to the child to disclose their diagnosis to their friends.
"Initially, they need to accept it first, but the reality is it can be months or years that they won't want to share with anyone," Sundel said.
Elizabeth Murphy-Melas, author of the children's book "Keeping a Secret: A Story About Juvenile Rheumatoid Arthritis," said, "A hurdle children with arthritis have is acceptance [by others and of themselves] while maintaining self-esteem."
In her book, the main character, Jennifer, learns she has juvenile rheumatoid arthritis after she finds herself struggling to play soccer. Despite her mother's encouragement, she hides her diagnosis from her friends, and instead lies about her condition. But Jennifer is relieved when she is finally able to reveal why she is not able to participate in physical activities with her friends.
Murphy-Melas said that while the use of excuses may be one way to keep a secret, her book is about the stages a child may go through in accepting his or her diagnosis.
"Jennifer waited and told her condition on her own terms," Murphy-Melas said. "Children with arthritis should be able to tell friends about the disease when they're ready, and on their own terms."
Finding Someone to Tell
As debilitating as juvenile rheumatoid arthritis can be for a child, some learn to overcome their silence about their diagnosis with the help of their parents who have also been diagnosed with rheumatoid arthritis. Although exact numbers are unknown, a minority of children with arthritis have a parent who is also affected, Duke's Rabinovich said.
But such is the case with 15-year-old Oscar Seman, who has polysystemic juvenile rheumatoid arthritis and whose mother Pam Seman, 48, of West Hills, Calif., also has rheumatoid arthritis. Seman said her son, who was diagnosed three years ago, is selective with whom he shares his diagnosis because he fears some will not believe him.
"Oscar will run, ride a bike and play with his friends," she said. "When I pick him up, he will try hiding his limp to the car and he will cry afterwards because he is in such pain."
Seman said she understands that her son may feel excluded from other teenagers because of his arthritis. Seman, who was diagnosed in her 20s, also tried not to let her arthritis limit her physical activity. She sometimes ignored symptoms and would skip taking her medications.
While the long-term effects of those who keep their diagnosis a secret have not been studied, Rabinovich said that in her experience, those individuals are more likely to ignore medication and perhaps other recommended treatment.
"Today, juvenile arthritis is manageable in that children with arthritis are physically indistinguishable from others," Rabinovich said. "Those who are in denial of their diagnosis will miss opportunities to help themselves."
Rheumatologist Sundel agreed, adding that arthritis treatment has helped children overcome the physical differences of the condition.
"Usually, within six to 12 months, some cases of newly diagnosed arthritis are controlled," Sundel said. "So keeping it a secret in the beginning may not have any physical ramifications in the long run."
Although Oscar does not respond to his doctor's recommendation to communicate his diagnosis with others, Seman said her son has now opened up about his experiences with her.
"With Oscar I would say it helps him that I have it, too," she said. "Because he sees in me what it will be like in the future -- I am living with it and I'm doing OK -- he'll talk to me about that."
While talking to a parent may be one step toward accepting the disease, Rabinovich said communicating with a close friend in the child's age group will offer another level of understanding, both from the peer and affected child.
"In general, the message is that secrets lead to bigger secrets and a child can find themselves very isolated without support for their condition, Rabinovich said, adding: "I think they would be surprised how much support their friends would give them if they only knew."