Arthritis Self-Management

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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.”

As we all know, most doctors are stressed these days, with big patient loads and not much time. You want them to see you as an individual, not just a body with symptoms. And to do that, you might want to let your doctor know you see him or her as an individual, too, not simply as a brain with a stethoscope attached. A participant in a self-management class told me, “I always try to identify with the doctor as a person. If there are pictures of his family in the office, I ask about them. If he has children about my son’s age, I ask about their schools and tell him about my son’s. It helps him think of me as a person, not just a patient.”

Active listening

Listening is as important as speaking up. We often don’t really hear what doctors are saying. A medical appointment can be stressful, and our anxiety can interfere with understanding. It helps to listen actively. Try repeating what you heard the doctor say — for example, “So I won’t see the effects of this new medicine for two weeks, and it might make it harder to sleep for the first few days. Is that what you said?”

Active listening goes a long way toward improving relationships with family, friends, and others, too. Just as with doctors, repeating and asking for clarification from others lets them know that you heard them and that you care. You can also paraphrase — that is, repeat the meaning of what someone said to you in different words. For example, your partner comes home and says, “I can’t stand my job.” You could paraphrase it this way, “Your job is really hard for you right now.” That kind of comment lets the other person know you understand. Other active listening strategies include doing some deep breathing (so you won’t interrupt) and using “verbal encouragers,” such as “uh-huh,” “go on,” or “tell me a little more.”

Explaining how you feel

“I wish people wouldn’t ask how me ‘How are you?’” says John Rodriguez, who has arthritis in both knees and hips. “Do they want to hear about how much pain I’m in or my problems at work? Or are they just being polite? I never know what to say.”

Many people with a chronic condition hate that “how are you doing” opener. Some people just change the subject by saying, “Good to see you,” or “You look nice today.” But Dr. Steiner points out that if you don’t answer the question, people don’t know how to deal with you; then when you need help, they’re confused.

“When someone asks, ‘how are you?’” she says, “I’ll say, ‘Do you want the short or the long version?’ Some people really want to know the long version. I look fine, but I’m limping, and they want to know why. Other people say the short version would be fine, and I just say ‘today’s a good day.’ I emphasize that today is a good day because if you just say, ‘I’m fine,’ some people will think you’re cured.”

You might also want to use more precise language to describe pain and fatigue. Saying, “I’m tired,” might not make your condition clear to a healthy person, who may have no idea what arthritis fatigue is like. You might do better with terms like “exhausted” or “fatigued” or a more colorful expression of your own. To describe pain, you might want to use a pain scale, saying something like “My pain is a seven today, and when it’s above five, I try not to go out.”

Communication is especially important because of the ups and downs of arthritis. Although on some days you wouldn’t dream of going for a walk with friends in the woods, on other days you might want to do just that. If your condition changes, you have to let people know. Dr. Steiner says there has to be trust within a family dealing with arthritis. “They have to know that you’re not going to exaggerate but you’re going to tell them when you need help.”

Learn the magic word

If there is one word in the English language that is the magic one for people with arthritis, it’s “no.” The more often you use it, the better your life is likely to be.

“No” comes in handy when someone is making unreasonable demands on you or offering you something you shouldn’t have or don’t want. The key is to be polite but firm, as in, “I’d really like to go to that movie with you, but my legs aren’t up to walking that much. Could you come over and watch a video instead?” Or, “I’m not going to drive you to the mall now. I’m cooking dinner.”

Saying no is difficult for most of us. Psychologist Albert Ellis wrote, “We think if we say no, the other person will get angry, and their anger will destroy us. Or we think that they will be hurt, and their pain will be our fault.” But these are distorted thoughts; in reality, people are OK with “no.” One woman in a self-management workshop I was leading, who had played a doormat role in her family for years, said, “My family was fine with my saying no, once they got over the shock. My teenage son even congratulated me on standing up for myself.”

Saying no is part of “assertiveness,” which means stating clearly what we want, need, or believe without attacking others. Assertive communication helps people understand one another better and get along better. The essence of assertiveness is the “I” statement, focusing on what “I” think or feel instead of what “you” have done wrong.

Here’s an “I” statement: “I’m really frustrated that the car wasn’t back when you said it would be. I hate to be late, and this really stressed me out. It would have helped me if you had at least called.” The comparable “You” statement might be: “You really messed me up by not returning the car, just like you always do. You don’t seem to care about my needs at all.”

Both statements contain the same information. But which one is more likely to get a constructive response and help solve the problem? “You” statements are experienced as attacks; they almost force the other person to be defensive. “I” statements let the other person know how you feel and how that person’s actions and words affect you. You’re much more likely to get a positive response.

If saying no is a big problem for you, you might want to take an assertiveness training program, which many health centers offer. It might also help if you and those close to you get individual, couples, or group therapy to improve communication skills.

The most important skill

In the self-management classes I lead, I teach that learning to find, ask for, and accept help is the most important skill anyone with a chronic condition needs. But in American culture, asking for help tends to be discouraged, and people think that needing help means they are weak. They worry about imposing on other people or fret about how they will repay the favor. In the American myth of self-reliance, you’re not supposed to need help. According to psychologist Darcy Cox, “For some people, asking for help means admitting they really have a problem. Some even tell me, ‘if I have to ask for help, it means that arthritis has won.’”

In reality, though, most people want to help. It makes them feel good about themselves. As one member of a support group in San Francisco told me, “By not asking, you’re denying the other person an opportunity to achieve their kindness potential.” None of us are truly independent; people helping each other is the way life works.

Here are a couple of tips on asking for help. Don’t get all your help in one place (as from a spouse). You might burn that person out and miss out on other, more effective sources of help. Try to have a team of friends, relatives, and professionals who can assist with various needs. You don’t have to explain why you need the help, either. Most people don’t want to hear a sob story. If your fingers won’t open a jar, you can just ask, “Could you please open this jar for me?” There’s no need to tell them about what your last x-ray showed.

Be specific about what you want. The handbook Living a Healthy Life With Chronic Conditions warns against vague requests such as, “I’m moving to a new house. Could you help?” It’s too open-ended. People might think they’re signing up for a month’s work. But if you said, “I’ve got a couch, a few chairs, and a dozen boxes to move. It will probably take about two hours,” most people would be happy to help.

Be polite. Shirley Lens says that when she asks a stranger to help her load her walker into her car trunk, she always smiles and says, “Please” and gives them a warm thank you. Sincere thanks go a long way toward repaying people.

Not rocket science

Communication problems are so common that thousands of therapists make good livings helping people communicate better. But it’s really not that difficult. Becoming more open about your emotions, wants, and needs takes practice, but it gets easier with time and the rewards are terrific. You will reduce your stress and become a more positive person to be around, someone people like to help. Avoiding mind reading, using “I” statements, saying “no” when appropriate, practicing active listening, and reaching out to others for help will make life easier for you and the people you care about.

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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