Talking About RA: Who Will You Tell, and How?

From the WebMD Archives

You may be the one who has rheumatoid arthritis, but it's going to touch a lot of other people in your life -- your partner, your kids, your close friends, and your coworkers.

They’ll want to know how to support you. But there’s a problem. "Most people don't have a clue what RA is," says Patience White, MD, a rheumatologist and vice president for public health at the Arthritis Foundation.

So what can you do to get people to understand that RA is more than an achy joint -- and tell them how to give you the kind of help you need? Use these tips.

How to Talk to Your Family and Friends

Do some research. Before you start talking to people, read up on rheumatoid arthritis. Learn as much as you can, says Lenore Frost, PhD, clinical assistant professor of occupational therapy at Sacred Heart University in Fairfield, CT. Your family and friends will have questions. Having answers will help them understand RA better.

Explain what the disease is like. Giving people the basics on your condition is just the first part. More important, tell them what it's like for you. You may look the same as always, so people may have no idea what you're going through. Be specific. Describe what morning stiffness feels like. Talk about daily fatigue. Really try to get across how it affects you -- what it feels like when you do certain tasks or what things are really hard to do.

Ask for help and be specific. "Most people are willing to help," says Jane McCabe, an occupational therapist in Laguna Hills, CA. "But they need guidance from you to know what they can do." If someone offers help, take her up on it. Then ask for what you need. Someone to shop for groceries? A few hours of child care a week?

Talk to your kids. If you have children, not talking to them about your RA doesn't really work. They're going to notice. So tell them that you may be tired and sore, but that you're still there for them. Make sure they know that you're getting good treatment.

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Discuss how things might change. You might not be able to do as much as you once did. The house may be messier. You might not be able to cook every night. Your disease might subside and then flare up. Make sure people close to you know what to expect, Frost says. Once they do, they can adapt.

If your family and friends don't realize what RA is like for you, they may have comments and complaints that frustrate you. This can be stressful. "The sooner you can start that open communication, the better," White says.

Get support from your doctor. If your spouse or another close family member has trouble grasping what you're going through, bring the person along to a doctor's visit. Urge them to ask the doctor questions.

How to Talk to Coworkers and Your Boss

Make sure you want to discuss it. Think carefully about how much you want to say. You don’t have to tell your boss or co-workers about your condition.

"If RA is not affecting your ability to work, there's really no reason to bring it up," White says. But if the disease is making it hard for you to do your job, it makes sense to talk about it.

Read up on legal issues. If you think you need help at work -- like extra breaks or a better-designed workspace -- know your rights before you talk to your employer. Contact the Job Accommodation Network, which can advise you. Talk it over with your doctor too, White says.

Have a clear sense of what you want. Don't go in with just a vague sense of that when you talk to your employer. What do you need? What will make you better at doing your job?

Talk to the right person. At larger companies, you might want to speak with someone in human resources. In smaller businesses, you may want to talk to your boss directly.

Whether you talk to your family, friends, or your boss, discussing RA can be hard. But people can be more understanding and helpful than you might expect.

You're also bound to feel a lot better after you talk about it. "I think that keeping your RA a secret can be more stressful than letting people know," McCabe says.

WebMD Feature Reviewed by David Zelman, MD on July 9, 2015

Sources

SOURCES:

Arthritis Foundation: Let's Talk About RA: "Talking RA with Family Members and Loved Ones," "Workplace Rights for Employees with Disabilities."

Lenore Frost, PhD, OTR/L, CHT, clinical assistant professor of occupational therapy, Sacred Heart University, Fairfield, Conn.

Darlene Lee, NP, practice manager, rheumatology clinic, University of California, San Francisco.

Jane McCabe, MS, OTR/L, CAPS, occupational therapist, certified aging-in-place specialist, Laguna Hills, Calif.

Patience White, MD, rheumatologist, vice president of public health, Arthritis Foundation. 

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