To Tell or Not to Tell You Have Arthritis
By Heather Johnson Durocher
Maybe you want to tell. Riding the emotional ups and downs of arthritis can be easier when you talk about it with family, friends, and even co-workers; some may be able to offer arthritis help and advice. Maybe you don’t want to tell. You may fear you’ll be treated differently once people know you have it, or you may simply dread the question, “What is arthritis?”
Alex Shikhman, MD, a San Diego rheumatologist, says the majority of his patients opt to stay quiet about their arthritis in the workplace for fear of it adversely affecting their job status. “They worry that they will get discriminated against at work and that it will affect their health insurance premiums,” says Dr. Shikhman.
Several factors can influence people’s openness, including what type of arthritis they have, how severe it is, and what their social environments are like, says Mark Lumley, PhD, a Detroit psychologist whose research has explored disclosure of secrets and how this affects mental well-being. Working with arthritis patients, he found that those with a more common, more socially understood disorder – osteoarthritis, for example, as opposed to fibromyalgia – tend to disclose more often.
To explore how this personal decision can play out in everyday life, Arthritis Today asked three people to share how they told others. Read their stories – and what psychologists have to say.
Sally
At age 25, Sally* is a successful public relations and marketing manager in Charlotte, North Carolina, who doesn’t let her rheumatoid arthritis (RA) stop her from running, biking and playing tennis. “I’m pretty athletic. I played three sports in high school and field hockey in college,” she says.
Diagnosed at age 20, Sally experienced periodic flares for a couple of years but is now enjoying a remission. “I have it in my small joints: fingers, wrists, toes, elbows. Every now and then I have a flare and my toes will be stiff, or one finger is really irritating,” she says.
Sally finds the arthritis help and support she needs from telling only family and close friends, including her boyfriend of five years. Beyond that, it’s just easier to keep mum about her condition when she’s around most other people. “It isn’t something I want to broadcast,” she says. “I just don’t want to be judged differently.”
Thankful that her arthritis is manageable at this point in her life, Sally feels all the more confident of her decision not to share her condition with her boss and co-workers.
“It’s not necessarily that I am hiding it from them. If it came up, I would be open and talk about it. But it’s not something I am going to go out of my way to tell them about,” she explains. “I don’t want a stigma attached to who I am in the workplace.”
Sally acknowledges that her decision to remain quiet with her employer could change if her condition worsened. “I feel very lucky,” she says. “It would be a totally different story if my RA was more severe.”
An expert says: According to Lumley, it’s understandable that Sally would opt to remain quiet about her condition, given that it’s manageable at this time, because it’s generally true that the stage and severity of your disease determines your decision to share.
“For a lot of people, when it hurts to shake hands or open a jar, they start to develop strategies to share their condition with people,” he says. “But when it’s only an internal experience, a lot of people choose not to talk about it.”
Rick
Paramedic Fire Fighter Rick Williams remembers nearly 10 years ago when throbbing pain in his hands would regularly awaken him at 2 a.m. The pain sometimes meant he couldn’t do his job the way he once had. “On the fire grounds, I would often be the backup person instead of working the nozzle (of the hose),” recalls Williams, 50, of Silverton, Ore.
It grew increasingly difficult for him to administer shots to sick patients. Even recreational activities with his firefighting buddies were tough to do. “We play volleyball, and I couldn’t set the ball,” he says.
A self-described “tough guy,” Williams brushed the pain aside, electing to take an over-the-counter pain reliever until, at his wife Karen’s urging, he scheduled a doctor’s appointment.
“It probably took four or five months for me to decide to go to the doctor,” says the father of three and grandfather of six. “I thought, ‘I can work through this.’”
When he was diagnosed with RA, Williams was relieved to know what had been causing the pain, but still didn’t share the condition with his fire chief and fellow firefighters. He worried how it could affect his job status. “At that point I had at least 11 years until I could retire,” he says.
He found he was more open at his church, where he was no longer able to play guitar in one of the music groups. “People got to know about my RA because I was having to back off activities that I’ve always done,” he says.
It took more than a year of trying different medications for Williams to feel that his arthritis was under control. He found the most success with a biological drug, which he continues to use today. With his arthritis better controlled, he felt more confident about sharing the news with those at work.
“I’m up front with the folks here at the station,” says Williams. “It’s been helpful in some regards, because they will come up to me and say, ‘Hey, I have a friend who was just diagnosed with arthritis,’ and it’s a good way to educate them on the medications and how they’ve helped me. It’s also opened up the communication lines with other friends and patients, too.”
An expert says: “If people know what’s going on with you, they can be more tolerant and supportive of you,” says Ken Wallston, PhD, professor of psychology in nursing at Vanderbilt University in Nashville.
“And you generally feel better with social support. If you’re having a bad day, for example, people understand and they may be more likely to give help.”
Seeking people who have struggled with health issues themselves, even if they’re not the same as yours, can prove helpful. “Everybody has something health-wise - or knows someone who has something,” says Wallston, who has studied the disclosure of health issues for 40 years. “Everybody has to cope with something.”
Jessica
Jessica* has only known life with arthritis. She was diagnosed with juvenile rheumatoid arthritis (JRA) and uveitis (inflammation of the eye that can lead to blindness) at nine months old.
Two years ago, Jessica had surgery on her left eye, which caused her vision to worsen. A recent flare caused additional vision loss, but she continues to see well with corrective glasses and soft contacts.
“The people who I am closest to in my life – they know [I have arthritis],” says Jessica, 24, now living in New York City. “But I don’t want to talk with everyone about it. I’ve looked into support groups, and considered joining, but I don’t really feel the need to discuss it with other people because I feel OK with it myself.
“When I have told people, it always requires a long explanation, and I hate to go through it again and again,” she says. “I think as long as you have that core group who knows, you’re OK.”
She admits that she has butted heads with her mom over her decision not to tell people. “My mom doesn’t quite understand why I don’t tell more people. She tells all of her friends, and I get mad at her about it because I don’t necessarily want everyone knowing,” says Jessica. “I try to be patient with her. I know she just wants to make sure I have someone to confide in.”
Jessica says she won’t be sharing it with her employer anytime soon. “I don’t want them to think that this is a disability,” she says, adding that when she needs to see her rheumatologist she tells work only that she’s going to a doctor’s appointment. “On a day-to-day basis I am pretty good. Sometimes it’s hard to grip things first thing in the morning. But it’s not debilitating – knock on wood, because I know that could change at any time.”
An expert says: As Jessica has discovered, keeping quiet can put a strain on relationships when a loved one has differing opinions about whom to tell. There can indeed be relationship implications should you decide to not tell family or friends who, if they someday do learn of your story, wonder why you didn’t say something sooner. “They may ask, ‘Why did you wait so long? Don’t you trust me?’” Lumley says.
While she may not be as forthcoming as her mother wishes her to be, Jessica has acknowledged that she shares with those closest to her, which is a smart move. Jessica could deepen her relationships if she pushed herself a bit out of her comfort zone, says Lumley, who believes people on average tend to do more hiding than they should.
“Challenge your fears,” he says. You’re likely to be pleasantly surprised that you’re accepted and loved just the way you are.”
*Names have been changed to protect the privacy of individuals in this story.
If you DO anticipate disability as a result of something like arthritis, however, it's best to notify your employer, so they can make accommodations for you, under the law. If you do NOT say anything, then they are not legally obligated to do so! As for family and friends, it helps to have them talk to an expert, such as a doctor, to tell them what you are going through, particularly if you will need them to take over some of your responsibilities, even for a while.