Arthritis Self-Management

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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 interdependence

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.

Last Reviewed on March 21, 2012

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.

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