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Communication as Self-Care

by David Spero, RN

What does arthritis self-management mean to you? Most people would answer that question by talking about exercise, relaxation, and medicines, and maybe about a few other things, such as applying heat or cold. Communication skills probably wouldn’t make the list. But communicating well — making our needs known, saying “no” when appropriate, listening and asking questions, explaining clearly what’s happening with us — can make a huge difference in our quality of life and in our relationships with family, friends, and doctors.

“People with health problems are, more than others, in a position of needing to communicate,” says Ann Steiner, PhD, a psychotherapist who has atypical rheumatoid arthritis (RA), osteoarthritis (OA), and osteoporosis. “People around a person with arthritis don’t know what to do; they don’t know how to help. Arthritis puts extra burdens on friends and family. But everybody can help each other, if they work on being a team. That takes talking.” Communication involves much more than getting help. It affects the quality of all our relationships. How do we react when a friend insists on retelling the plot of her favorite TV show, line by line, when we are desperately tired and need to relax? How do we communicate with our doctor about the side effects of that new medicine or with a boss about needing some work accommodation?

They can’t read your mind

Joan Wilson, who has had OA for 30 years, remembers how communication problems affected her marriage. “My husband was working so hard,” she says, “and I felt like I came second. We had two young kids, my back hurt, and it was getting to be too much. Then we went to a couples weekend, and I learned that I was expecting my husband to be a mind reader. I learned I had to tell him what I felt if I expected him to understand, and he learned that too. That really helped.”

That kind of story is typical, says Dr. Steiner, who notes that we often expect other people to be mind readers on the grounds that if they really cared about us, they’d already know how we feel. It’s a dangerous misconception because, as she explains, “Unless people are willing to work on understanding each other, it can cause enormous stress, and it’s unnecessary. You have to tell people what you’re feeling, or they won’t know.” Often, we especially expect doctors to know what’s going on inside our heads. “I hear some people talk and talk with doctors and never get to the point,” says Shirley Lens, who has had RA since age six. (She’s 82 now.) “I don’t know if they ever get straight answers. They think the doctor is godlike and should know what they’re thinking without having to say it. When I’m talking to a doctor, I’ll say, ‘I’m in pain. This medicine affects me in such and such a way. What should I do?’ I’m very direct.”

Communicating with doctors

You might think that being blunt with your doctor would be unwelcome, but that’s not necessarily so. Michael Stevens, MD, president of the California Rheumatology Alliance, would like more patients to be as direct as Shirley. “I encourage patients to be concise, to tell me what has happened to them in chronological order. It sometimes helps if they bring a family member to help them remember medications and what happened when.” Bringing another person with you also gives you an extra pair of ears to hear and remember what the doctor said and an extra voice to ask questions and clarify instructions. Many doctors are rushed, and they may use medical terms instead of plain language. If you don’t understand something, you, or the person with you, shouldn’t be afraid to say so. You might also want to take notes or tape record the discussion, or both. Dr. Stevens says he sometimes asks patients to keep logs of their symptoms. That way, patient and doctor can see how things are changing and what effects medicines are having. “With new medications,” he says, “it’s important to report any troublesome changes and any new symptoms.” You should also write down any questions as you think of them. Trying to remember every question makes it only too likely that you’ll have forgotten at least some of them by the time you see the doctor. If you write down questions as they occur to you and bring the list with you, you will have a better chance of getting the answers you need.

Prioritize your questions. If you have a long list, your doctor may not have time to answer all of them during the appointment. You should get answers to the top two or three on the spot, and the doctor should get back to you with answers to your other questions within a day or two. Niall Roche, MD, medical director of the ValleyCare Arthritis Center in Pleasanton, California, says, “The number one thing is to be honest. Tell the doctor what you’re really doing. If you’ve stopped taking a medicine or plan to stop, let me know. I won’t get mad, but we will be able to talk about the pros and cons and what’s likely to happen.”

Last Reviewed on June 13, 2012

David Spero is a nurse/educator and author of The Art of Getting Well: Maximizing Health When You Have a Chronic Illness (Hunter House, Alameda, California, 2002). Visit him at www.davidsperorn.com or write to Nurse@art-of-getting-well.com.

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