Maintaining Independence

by Stephen Wegener, PhD, ABPP

Arthritis affects each person differently. This fact should not surprise us — there are over 100 different types of arthritis, and the symptoms and severity of each person’s arthritis are unique. Yet in spite of these many differences, every person with arthritis is faced with common challenges to his or her independence.

People with arthritis, as well as their families, are called on to adapt to these challenges. For some, they may be relatively minor — for example, arthritis may make it a little harder for them to get dressed or walk as quickly as they used to. For others, the changes may be more significant — they may need help with bathing, dressing, or other everyday activities. But no matter how great or small the changes, they can make people with arthritis fearful that they are losing a very important part of themselves — their independence.

Independence and

Independence is part of our culture and our identity, and most people place a high value on it. As a psychologist, I talk with many people who have chronic illnesses and disabilities. When I ask them to describe themselves and what they value in life, I often hear statements such as, “I like to do things for myself,” “I don’t like to ask other people for help,” or “I am used to being independent.”

Arthritis can force us to face up to and examine these pervasive ideas about independence. Some people with arthritis are able to manage on their own in spite of the challenges of their condition. But many others will need at least some assistance. They may need help with health-related tasks such as getting to appointments, dealing with insurance claims, and researching treatment options. Then there is the personal work of dealing with the emotional and family challenges that can accompany arthritis. And all of this is on top of the normal work of everyday life. Still, it can be tough for people with arthritis to accept that they need help and that, more so than before, they depend on others for that help.

It is important to remember that there is nothing unusual about depending on others. Whether we are working, raising our children, taking care of our home, or dealing with other problems in life, all of us require the help of other people to some extent. It is a basic human need both to give and to receive help and support. We need people we can rely on, and we also need to feel that we help others. In other words, we are all interdependent. This interdependence can take many forms. Some people have a few close friends or family members in their corner, while others have a larger network of people they can call on. There is no right number of relationships. What is important is that you have someone you can count on when you need help.

Different people respond differently to their need for help. Some are fiercely independent, refusing help even when it is necessary and in their best interest. Others find it easy to ask for help and express their gratitude. Still others accept help that they really don’t need or that may not be in their best interest. For example, they may let someone else do tasks that would otherwise help them stay fit. Those of us who study independence and arthritis find that people are more likely to maintain their independence when they are able to clearly ask for the help they need and refuse unnecessary help. The trick is being able to distinguish between the two types of help — “helpful help” and “unhelpful help.”

Helpful help

Helpful help is the support you get from family and friends that makes it easier for you to meet the demands of living with arthritis. Helpful help can come from unexpected sources. You may find that some relationships have changed for the worse under the challenges of arthritis, and that those people aren’t as supportive as you would have expected. Other relationships may have continued unchanged. You may even have discovered support and love that you did not know were there.

Just as we get support from a variety of people, we may receive helpful help in many different forms. The following are the four main types:

  • Information: This type of help is the advice, answers to questions, and suggestions our friends and family give us.
  • Practical support: Babysitting, providing transportation, helping out with chores, and even lending money are all ways of giving practical support.
  • Companionship: This type of help includes spending time or going out with someone and sharing common hobbies and interests.
  • Emotional support: Listening, sharing, and acknowledging feelings are emotionally supportive acts, as are giving reassurance and providing physical affection such as hugging.

You may get — and give — different kinds of helpful help in different relationships. One friend may be a big help in getting chores and tasks done around the house, while another may be a good person to talk things through with. In the same way, you may provide practical help to one person by driving him to an appointment and be a good listener for someone else. The helpful help we get and give allows us to get things done in life and builds our self-esteem.

Unhelpful help

It may seem counterintuitive, but not all help is desirable. You may sometimes find that even though people are trying to help, they are not really that helpful. The things they do may actually make things worse. This is unhelpful help. The following are some examples.

  • Criticism: “Ever since your surgery you have been so quiet!”
  • Avoidance: “Oh, let’s not talk about that; it will only upset you. It’s in the past.”
  • Dismissing or minimizing: “What are you complaining about? Look on the bright side! Be thankful you only have arthritis—other people have it worse.”
  • Unsolicited advice: “I saw this program on TV about a new drug that you should talk to your doctor about.”
  • Forced cheerfulness: “That’s nothing! You will feel better if you just cheer up!”
  • Over-helpfulness: “Let me get that for you. You really should not be walking that much—I don’t care what your doctor said.”

You can see that unhelpful help comes in many forms. Sometimes it can be unintended criticism; other times the person wants to “help” by avoiding uncomfortable emotions. Sometimes a person wants to do things for you that you would prefer to do or really should do for yourself. If you enjoy letting others help you, make sure they are not doing favors that keep you from being as physically active as you can be. For example, if you usually walk to the library and are comfortable doing so, don’t miss out on the exercise by taking a ride from a friend.

Dealing with unhelpful help is not always easy. Good communication is critical if you want to get less unhelpful help and more helpful help. Let’s explore one tool that’s essential to good communication: assertiveness.

Assertive communication

While good listening is the cornerstone of good communication, assertiveness is a particularly important skill when dealing with unhelpful help. Assertiveness is the ability to honestly express your opinions, feelings, attitudes, and rights in a way that respects the rights and feelings of others. Unlike aggressive or passive communication (discussed below), assertive communication sends the message, “I count and you count.” For this reason it is more likely to get you the help you need.

At times people come off as aggressive when they are trying to be assertive. When people communicate in an aggressive manner, they express their thoughts, wishes, and feelings at the expense of the rights and feelings of others. They often use a loud voice, and may even point their finger at the other person. An aggressive communicator often blames others, uses put-downs, and does not listen. The message sent is “I count, and you don’t.”

The opposite of an aggressive communication style is a passive communication style. When people communicate in a passive manner, they don’t express their thoughts and feelings directly. They may apologize for themselves, prefacing their remarks by saying, “I’m sorry to have to ask you this.” Their voice is soft or weak, and they avoid eye contact. The message is “I don’t count — only you count.”

Assertive communication treads the line between aggressive and passive communication. Assertive communicators are open to compromise and at the same time respect their own rights, dignity, and independence. Their voice is relaxed, calm, and firm, and they make good eye contact.

In most situations, there are clear advantages to assertiveness. Being assertive helps you feel good about yourself and about how you treat others. It can also help reduce your anxiety and protect you by making people less likely to take advantage of you. Finally, assertive communication helps build respect between you and the other person.

Assertiveness in practice

Most people find it easy to be assertive, but only in certain situations and with certain people. This is natural. Are there situations in which you have difficulty being assertive? It may be when talking with your boss, an older brother or sister, or an acquaintance. You should go over these situations in your mind beforehand so that you are ready to be more assertive when the time comes to speak with these people.

Pay attention to your nonverbal communication as well as your words. Making eye contact and speaking in a calm but firm tone of voice help us communicate in an assertive manner. The following strategies will also help, especially in difficult situations.

Don’t be afraid to ask. Some of us find it hard to ask for help when we need it. We may feel that asking for help shows a weakness on our part. It is important to remember that we all have needs and that most people want to help. Think about the last time someone asked you for help. How did it make you feel? You were probably glad to help the other person out. Other people often feel the same way. Say clearly what you want or don’t want, while remaining open to alternatives.

Learn to say no. An important part of remaining independent is knowing when and how to turn down unhelpful help. For some people, saying no comes easily, but others have a tough time refusing any kind of assistance, no matter how unnecessary. Bear in mind that people who really want to help you will not be offended by your refusal and will respect your right to decide what help you need. When someone offers unhelpful help, reply with a polite but firm “No, thank you.” If you like, you can suggest an alternative — something the person can do that will truly help you.

Make “I” statements. What’s the difference between an “I” statement and a “you” statement? “I” statements are clear expressions of what you think, want, or feel. They are statements of fact, delivered in a nonconfrontational way. “You” statements, on the other hand, tend to focus on what another person should or should not do, and they can make others feel blamed, judged, or criticized. It is therefore to your benefit to begin assertive statements with “I.” A good “I” statement might be, “I think it would be best if I took a rain check on going out because my arthritis is really bothering me today.” Another one could be, “I get worried when you are late because I am afraid something might have happened to you.” Notice that both of these statements say plainly what you feel, think, or want — and why.

Listen well. Assertive communication requires good listening skills. Just as we have a right and a responsibility to be clear about what we need and want, we have a responsibility to listen carefully to others. Listening carefully to what someone is trying to tell us is very different from just hearing their words. Hearing is just paying attention to what someone says. Listening is an active process, in which you work to understand what someone is trying to communicate and let them know you are following what they are saying. Good listening skills must be learned and practiced. But an ability to listen can be the difference between an assertive and an aggressive communicator.

Say “thank you.” When we receive helpful help, it is important to express appreciation for it. Not only does this make the helper feel good, but it also encourages him or her to be there for us the next time we need help. Many of us don’t always show our full appreciation, however, perhaps because we are embarrassed or because we have difficulty expressing gratitude. Sometimes, we simply don’t know what to say. Get in the habit of letting people know you appreciate their helpful help. You won’t get comfortable doing this unless you practice.

Here’s an example. Your neighbor says, “My wife told me you are still having trouble with your leg. I’m going to be out here mowing my lawn anyway. I can just mow yours while I’m at it.” What do you say? Or your daughter says, “You’ve been saying you are having trouble remembering things. If you like, I can go to your appointment with you. That way I can take notes, and you can focus on what the doctor is saying.” How should you respond? Preparing for situations like these can help you gratefully accept the helpful help you are offered.

A final word

When you have arthritis, you may find that you need more help than you used to, and you may feel that accepting this help means you’re losing your independence. But that doesn’t have to be the case. By identifying and accepting “helpful help” and avoiding “unhelpful help,” you can get the support you need without feeling that you are losing an important part of yourself. Your main tool in this pursuit is assertive communication, which includes asking for what you need clearly, listening well, and expressing gratitude.

To get the ball rolling and apply the skills you’ve learned, pick one relationship where you have been getting, and giving, helpful help. Think about how good it feels to know you have someone who has been there for you, and for whom you are there as well. Talk to the person and express your appreciation for his or her help. Next, choose a relationship where you have been getting unhelpful help. Talk to this person using your assertive—not aggressive—communication skills so that you can get better help. It may take a while to get the helpful and unhelpful help in balance. But if you keep at it, you’ll find yourself better able to get the help you need while maintaining your independence.

Last Reviewed March 21, 2012

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Stephen Wegener is Associate Professor and Chief of Rehabilitation Psychology at Johns Hopkins University in Maryland. He thanks his colleagues, Drs. Ellen MacKenzie, Renan Castillo, and Nathan Parmer, for their contributions to this article.

Statements and opinions expressed on this Web site are those of the authors and not necessarily those of the publishers or advertisers. The information provided on this Web site should not be construed as medical instruction. Consult appropriate health-care professionals before taking action based on this information.

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