by Wendy McBrair, MS, BSN, CHES
In the late 1950’s and early 1960’s, people with health problems began to take a greater interest in learning what they could do to care for themselves. A leader in this self-help movement was Alcoholics Anonymous, which gave people with alcohol problems an opportunity to come together to help and support one another. People with chronic conditions soon saw that self-help could work for them, too. If you were faced with a chronic condition that had no cure, it made sense to learn to care for yourself as well as possible, to complement the care received from doctors.
The demand for self-help continues to grow. Because of better diagnosis, better medical care, and better medicines, it is now more common for people with one or more chronic conditions to live many years after their diagnosis. Huge numbers of baby boomers are beginning to enter their sixties — when many people develop chronic health problems. This means that more and more people are in search of resources they can use to reduce the impact that chronic health problems can have on quality of life.
Fortunately, the arthritis self-help movement is alive and growing. Some people who receive a diagnosis of arthritis follow the “ostrich” routine. That is, they put their heads in the sand and pretend arthritis is not really going to affect them. But most are eager to seek out new skills and useful suggestions that will help them manage their arthritis. When they do, the research shows, they tend to feel better, enjoying improved joint health and a higher quality of life. To help you achieve similar results, this article will focus on six types of resources for arthritis self-help so you can choose the ones that will help you the most. The six types are educational literature, health fairs, community presentations, support groups, self-management courses, and exercise programs.
The quest for self-help usually begins with a search for information that you can understand (and that explains any medical terms it uses). This information can be found in pamphlets, on the Internet, and in books. However, you are not meant to use the information you come up with to treat yourself. Rather, the goal is to give you the information you need to work better with your health-care team. Armed with information, you can ask better questions, understand a proposed treatment plan, or identify symptoms, side effects, and problems. If there are suggestions for care in the information you find, it’s wise to share them with a health professional before acting on them. You may need additional guidance. Or you may find out that the suggestions are not right for you. In some instances, general information can be a little scary, and you may need a health professional to put it in context for you.
Look for information from reputable sources. There is a lot of misleading information out there, especially on the Internet. Look for books or pamphlets put out by and Web sites run by leading organizations, such as the Arthritis Foundation or WebMD. Resources from medical centers or universities such as the Hospital for Special Surgery, the Mayo Clinic, or the Johns Hopkins Arthritis Center are also reliable. Organizations that address your specific health problems, such as The Lupus Foundation of America or The National Fibromyalgia Association, are good sources as well. You may be able to ask your doctor to recommend good books or Web sites.
Also, keep in mind that everyone’s arthritis is different. The information you find may mention lots of symptoms or name lots of different medicines. That does not mean that you will get all the symptoms, develop all the problems listed, or need to take all the medicines suggested. Even a new medicine written about in a reputable journal or newspaper may not be right for you or your particular health problem. In some cases, it may still need to be tested over time to see if it is effective and safe.
You can also find health information at community events called health fairs. At a health fair, various health professionals and organizations provide information on health problems and related resources. Volunteers sit at tables to give out literature, demonstrate equipment, or explain how their profession or organization can help you. You may have a chance to ask a question or briefly discuss a health issue with a health professional. You don’t usually have to pay to attend a health fair.
Some health fairs offer actual health screenings. You may be able to get your blood pressure, blood glucose, and cholesterol levels measured and your vision and hearing tested. Occasionally, a speaker also presents information on a specific topic. Drawings for gifts, games, and food often play a part in these fun, one-day events.
Remember that the information provided at health fairs is for the general public and is not meant for any one person. It is not meant to replace a visit to the doctor or other health-care provider. In the same vein, the questions you ask of health professionals manning booths should be general in nature. The professional is not there to diagnose your health problem. But he or she may be able to offer some interesting written material, help you identify the next step in your care, or provide another helpful resource.
Community presentations usually come in one of two ways. In the first, a speaker is invited to attend a group meeting and present information on a specific topic. An example might be a rheumatologist attending a monthly meeting of a senior citizens’ organization and giving a talk on arthritis. In the best scenario, the topic is of interest to most members, and the information is general and not too technical. The second kind of presentation also has a specific topic. But an entity such as a hospital or clinic sponsors it. Individuals interested in the topic can choose to attend.
Sometimes, the person giving a community presentation has developed it himself or herself. Other times, the presentation is “canned.” That means that a group or organization has developed the information and the presenter has made few or no changes. Whatever the case, the information in the presentation should be general, easy to understand, and not specific to any one person in the group. Most times, a community presentation will include a question-and-answer period. Attendees who ask questions should make them short and general in nature. They should not expect the speaker to diagnose or make specific recommendations for care. Sometimes a presenter stays after the program has ended to answer questions from people too shy to ask them in front of the larger group. Usually, you can get pamphlets and/or books related to the topic, and there is no charge for the presentation.
Community presentations can help a person with arthritis learn about appropriate care for arthritis, decide what kinds of treatments they are interested in, learn about approved self-help resources and programs, and even meet health-care professionals who could provide future care.
Support groups are one of the best ways for people with arthritis and their families to share their experiences and learn from one another. The goal of a support group is to provide a chance for people to get support and education from others facing the same or similar challenges. There are general support groups for people with all types of arthritis. There are also groups for people with a specific type of arthritis. For example, there are groups for people with rheumatoid arthritis, lupus, fibromyalgia, osteoarthritis, juvenile arthritis, or osteoporosis. There are even groups for young adults who have arthritis.
Support group meetings are usually held monthly at a convenient, accessible location in the community. This is often a library, a hospital, or a senior citizens’ meeting place. Most of the time, you don’t have to pay to attend a support group.
Most groups have a designated leader, often a trained person with arthritis or a health professional. How each group is run depends on the leader, group expectations, and the sponsoring organization. Some groups focus on group discussion. The topic of the discussions may develop from an idea or problem brought up at the start of each meeting. Or the group leader may select it and announce it before the meeting. Other groups provide presentations by community health professionals on a topic of interest to the group. For example, a physical therapist might present an overview of physical therapy, or a psychologist might talk about stress-management techniques. Time may be set aside near the end of the meeting for group members to ask the presenter questions or to discuss the information just presented. There are a few studies showing benefits for people who go to support groups. For example, they have a better understanding of the issues discussed. But researchers have found support groups difficult to study because they have varied programs, presenters, curricula, and attendance.
The skills of support group leaders can vary greatly. So can the resources available to them. Ideally, all leaders will have attended a leadership training course given by the organization that sponsors them. They should know enough to avoid presenters who just want to advertise their services, present “cures,” or present information and recommendations not generally approved by the medical community. They should be good at making all group members feel welcome, without letting any one attendee take over the meeting or talk the entire time. They should have resource persons they can call on after a meeting if a question from a group member needs professional guidance.
Attending a support group meeting can help a person put into words and grow comfortable with new challenges, without worrying about sounding like a complainer or whiner. It can help people with arthritis feel they are not alone. The families that attend learn that their family member is truly doing his or her best in this difficult time of adjustment and change. Family members can learn how best to help their loved one. They can also learn what resources are available in their area.
If you think attending a support group is for you, try calling your local hospital, health department, or Arthritis Foundation chapter for the group closest to you. If there are no groups available, think about starting one. It is a wonderful volunteer opportunity and can be a very gratifying experience.
The first self-management, or self-help, course for people with arthritis was developed 30 years ago at Stanford University by Dr. Kate Lorig. Called the Arthritis Self-Management Program (ASMP), or the Arthritis Self-Help Course, it is a six-week group course designed to teach people with arthritis (and their families) how to manage the condition as effectively as possible. The course teaches joint-friendly exercise, appropriate medicine use, healthy eating habits, good communication skills, and other strategies to help people deal with the pain, fatigue, and frustration that can accompany arthritis. Trained volunteers who often have arthritis themselves lead the courses.
Clinical studies of the ASMP show that it is effective. People who take part in the course have lower levels of pain and depression and improved quality of life. The Centers for Disease Control and Prevention (CDC), the Arthritis Foundation, and the American College of Rheumatology (ACR) all endorse the ASMP. Many state health departments are now offering the course to people with arthritis. The Arthritis Foundation also offers it, under the name Arthritis Foundation Self-Help Program. If you are interested in taking an arthritis self-management course, contact your local Arthritis Foundation chapter, hospital, or health department.
There are some other self-help courses along the same lines. The Chronic Disease Self-Management Program focuses more generally on self-help skills for increased wellness. A version is now available for free online. The Fibromyalgia Self-Management Course and the Lupus Self-Management Course are available in some areas.
Self-management courses are usually free, but in some cases there may be a small charge. If you want to take part in one of these courses, you should enjoy following a standardized curriculum, sharing with others, and doing some homework.
Years ago, people with arthritis were told not to exercise. In the 1980’s, that advice began to change. Physical therapists put together programs of exercises for people with arthritis that could be offered as classes. To make sure that people teaching the classes knew what to do and what to avoid, the Arthritis Foundation took on responsibility for training class leaders. The Foundation, working with the YMCA, also helped set up exercise classes across the country. Soon, studies were showing that warm-water programs and land programs could actually improve joint health. The classes have had a number of names over the years. At this time, they are called The Arthritis Foundation Aquatic Program (AFAP), The Arthritis Foundation Walk With Ease Program, and The Arthritis Foundation Exercise Program. At this time, they are called the Arthritis Foundation Water Exercise Class and the Arthritis Foundation Exercise Program (Land). The programs may still be known by the older names in some parts of the country.
If you decide to join an exercise class, make sure that a trained and certified instructor leads the class. Your instructor should understand the type of arthritis you have, know how to help you build your exercise program gradually, and know which exercises you shouldn’t do. The instructor should also be recertified periodically.
Most classes for water exercise are held twice a week and last about 45 minutes to an hour. For warm-water classes, make sure the water temperature is no less than 83°F (warm water loosens up the joints) and that the class is held in an accessible pool with a lifeguard in attendance. Land exercise classes are also about 45 minutes to an hour and may be held once or twice a week. You’ll most likely have to pay a small fee for exercise classes.
Many people enjoy the “group” atmosphere of an exercise class. But for others, exercising alone may be more appealing. If exercising alone is for you, you can buy exercise videos or DVDs through the Arthritis Foundation Web site. If you branch out and try any other videos, make sure a reputable organization has approved them. Some videos may recommend exercises that are not suitable for people with arthritis.
Tai chi is a form of exercise that combines stretching, strengthening, and relaxation exercises. Dr. Paul Lam developed the Tai Chi for Arthritis Program, which is offered in some parts of the country. In addition, the Arthritis Foundation sponsors classes (The Arthritis Foundation Tai Chi Program) derived from Dr. Lam’s program. Instructors in Tai Chi for Arthritis classes and in the Arthritis Foundation’s classes are specially trained so they understand the limitations arthritis can bring.
Many yoga instructors and people who have arthritis believe that yoga is also helpful. Arthritis-friendly yoga classes are available. However, at this time yoga classes suitable for people with arthritis are not standardized. Also, they have not been widely studied to see how effective they are. Should you decide to try a yoga class, make sure the instructor knows of your special health problem and knows how to change the exercises for you. (For more on yoga for people with arthritis, see “What Is Yoga?”)
If you prefer to exercise alone or to take a class that is not designed specially for people with arthritis, it may be best to start by discussing exercise guidelines with a physical therapist. Or you could review the guidelines for exercise in a reputable book such as The Arthritis Helpbook (Da Capo Press, 2006) or Straight Talk on Arthritis (Mayo Clinic, 2006). Or you could even take the Arthritis Self-Management Program mentioned above. This way, you are much less likely to hurt your joints when you exercise. And remember, before you start any exercise routine, check with your doctor to make sure that what you are planning to do is safe for you.
Thirty or forty years ago, people with arthritis had a hard time finding any information about it. These days, with so much information and so many resources available, the challenge is to find the information that is best for you. What’s best can be based on many different factors. These include your personality, your interests, your needs, what kind of arthritis you have, your financial situation, your doctor’s suggestions, where you live, and whether you can find suitable programs nearby. Make sure you do your research, and check with the professionals before acting on the information you find. As the number of Americans with arthritis continues to grow, remember that you are not alone in your quest for quality arthritis information and self-help guidance.
Last Reviewed May 2, 2012
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