How to Adjust to Life With Arthritis

It is very natural to be fearful about a new situation in which you have limited knowledge and feel as if you no longer have control over what is happening to you. Whether it's starting a new job, moving to a new city, or being diagnosed with a disease such as arthritis, fear is a normal reaction. This fear may be even greater for people who have been healthy their entire lives and now find themselves faced with the problem of having to depend on others, including family and medical personnel, to help them perform everyday activities. One step toward fighting the fear and regaining some control is learning as much as you can about your disease.

One of the best sources of reliable information about your specific condition should be your doctor. Other members of your health-care team are also likely to be valuable resources in this regard. From them, you should be able to get a clear description of what is happening to your body, if and how the disease is likely to progress, and how the various treatment strategies -- medications, physical therapy, occupational therapy -- may help you to improve.

If you are new to the role of patient, you may find communicating with your health-care providers a bit frustrating at first. It may seem at times that they are speaking a different language, using unfamiliar terms and abbreviations that mean very little to you. It is important, therefore, for you to be assertive and ask for clarification of any terms or statements that you don't understand. Do not be afraid to ask your doctor for an explanation in English, not in medical jargon.

If you find it too intimidating to ask your doctor for clarification, it may help to keep in mind that you are a consumer in the health-care arena. There is competition for your business. You have a right to be well informed, and if your current doctor is unwilling or unable to provide that clarification, you can take your health-care business elsewhere.

If you seem to forget all your questions when you're at the doctor's office, or if you don't come up with questions until after you've left the office, it may help for you to sit down and write out your questions when you're at home. Try as best you can to ask specific questions rather than general ones such as "What's going to happen to me?" When you make your next appointment, tell the nurse or receptionist that you have some questions that you need to discuss with the doctor, so that time can be allotted for this. Then take your list of questions with you to the appointment and check them off as you get them answered.

Take notes if you can, since it's easy to forget multiple explanations and instructions when you walk out the office door. You may even find it helpful to bring someone -- a friend or relative -- with you so that they can listen and take notes for you. Since you are likely to be dealing with a variety of emotions as well as with the sometimes complicated information that your doctor is relaying about your condition, having a support person with you can be truly helpful. Also, be sure to ask your doctor if he or she has any patient-information sheets or brochures about your disease that you can take home with you for reference.

The information is there if you make the effort to get it. It can be the key to fighting fear and feeling as though you are getting back into the driver's seat. However, there is a normal amount of depression that is associated with a diagnosis like arthritis. In the next section, we will offer you some pointers to fight off those negative thoughts.

This information is solely for informational purposes. IT IS NOT INTENDED TO PROVIDE MEDICAL ADVICE. Neither the Editors of Consumer Guide (R), Publications International, Ltd., the author nor publisher take responsibility for any possible consequences from any treatment, procedure, exercise, dietary modification, action or application of medication which results from reading or following the information contained in this information. The publication of this information does not constitute the practice of medicine, and this information does not replace the advice of your physician or other health care provider. Before undertaking any course of treatment, the reader must seek the advice of their physician or other health care provider.

 

Depression is a normal reaction to stress and tension. It's not surprising, then, that depression is a common side effect of coping with arthritis. The chronic nature of arthritis can bring fears about future functioning. The disease's unpredictability can mean added disappointments in daily life. Coping with pain and physical limitations can force unwanted changes in habits and lifestyle, as well as in self-view. Added to the usual pressures of life, these stressors can trigger depression. Depression can even be a side effect of some arthritis medications.

Be Vigilant

While depression may be a natural response to stress, it is far from healthy for the person with arthritis. When depressed, the person with arthritis may spend more time focusing on pain and may neglect to keep up with exercises, medications, and other self-care measures. This, in turn, can increase pain and stress, locking the person in a vicious cycle.

That's why it's essential to stay alert to the signs of depression and take steps to keep it from taking hold. The following are some signs to watch for:

If you begin to notice these signs, take action. Make a concerted effort to keep up with your exercise routine and medication schedule. Force yourself to get out of the house. Make appointments with friends or family for lunch or pleasurable activities. Talk about your feelings with a close friend, family member, or member of the clergy. If these steps don't help, talk to your doctor; he or she can prescribe medication and/or refer you to a qualified therapist.

This information is solely for informational purposes. IT IS NOT INTENDED TO PROVIDE MEDICAL ADVICE. Neither the Editors of Consumer Guide (R), Publications International, Ltd., the author nor publisher take responsibility for any possible consequences from any treatment, procedure, exercise, dietary modification, action or application of medication which results from reading or following the information contained in this information. The publication of this information does not constitute the practice of medicine, and this information does not replace the advice of your physician or other health care provider. Before undertaking any course of treatment, the reader must seek the advice of their physician or other health care provider.

 

Often, people who are diagnosed with a chronic illness, such as arthritis, go through stages of adjustment. These stages can carry with them powerful and sometimes confusing emotions -- emotions that are confusing not only for the person with the disease but also for those who care about that person. By encouraging yourself through positive self-talk and by talking to your friends and family about how you feel and what you need, you'll have a smoother journey through this adjustment phase.

It may be helpful, first off, to take a look at some of the phases that people typically go through upon being diagnosed with a chronic illness. You may recognize yourself as being in one of them right now.

Perhaps the first emotion experienced is shock -- that state of unrealness and numbness. Another common first reaction is disbelief, or denial. When faced with a crisis, there's a natural tendency to want to say "no" to what you are hearing, to think that the doctor must be talking to the wrong patient or that the diagnosis must be wrong. Although it is natural, this stage can be problematic for the person with arthritis because if it lasts too long, it may delay appropriate treatment and self-care.

Once the diagnosis does begin to sink in, you may find yourself angry -- angry that you have the disease and angry about what it may mean in terms of your lifestyle and capabilities. Unfortunately, you may find yourself venting some of that anger toward people who care about you and who want to help. This, in turn, may cause feelings of guilt on your part.

Other common feelings include fear (fear of the unknown, fear of how the disease will limit your life, fear that you will become dependent on others) and depression. Keeping open lines of communication can help keep fear and depression from standing between you and the support you need.

Although having the support of family and friends during this adjustment period can make the process easier to deal with, you may not always be able to reach out for help. Indeed, the anger, frustration, and disappointment you may feel as a result of your disease may put distance between you and those you care about. But it will be to your benefit if you can let them in on what you're feeling.

For example, if you're feeling angry and frustrated that you can't do as much as you used to because of your arthritis, let your family or friends know that. Sometimes, simply telling someone about it and knowing that someone else knows that you're struggling can help ease your frustration. It can also help them to understand and not take it personally if you are a bit on edge or irritable. They may even be able to help you see and focus on all that you can do or on the creative ways you've developed to conserve energy.

Just as important as communicating with people who care about you are the conversations you have with yourself, otherwise known as self-talk. You communicate more with yourself than with anyone else. And you need to be aware of the messages you give yourself and the ways you react to your situation and to other people. For example, being able to admit to yourself that you are feeling bad and telling yourself that it's normal to feel bad sometimes is just as important as conveying those feelings to your partner or friend.

It allows you to give yourself a break for being a bit grumpy and may help you catch yourself before you take that grumpiness out on someone you love. Likewise, praising yourself for all that you do get accomplished despite your arthritis is much more constructive and self-supportive than dwelling on the limitations that arthritis has caused.

So start talking -- and keep talking -- to yourself and to the people whom you look to for support. But don't forget that you also need to listen. Those who are close to you must cope with your arthritis too, and they are likely to have questions, fears, and concerns of their own. Good communication is a two-way street. Keep the street open, and together you'll get through the ups and downs of coping with arthritis.

Another instance when it is important to keep the lines of communication open is during the many sexual frustrations that might occur while you are adjusting to arthritis. We'll deal with this sensitive situation in the next section.

Discussing the issue of sex and how arthritis might affect it may be uncomfortable for you. It may be uncomfortable for your partner, too. It may even be a topic that your doctor is uncomfortable discussing with you. But it's important not to let discomfort with the subject matter keep you from having a fulfilling sex life despite your arthritis.

Arthritis rarely affects the sexual organs themselves. But that doesn't mean it doesn't affect sexual interactions. Arthritis can have an effect on sexual activity and pleasure in physical and emotional ways. By being creative and flexible and by being willing to discuss the topic with your partner, however, you are likely to discover that your sex life can be as fulfilling -- or perhaps even more fulfilling -- than it was before arthritis.

Arthritis pain, fatigue, limited movement, and reduced strength in the hands, arms, or hips can be physical challenges to a fulfilling sex life. Pain is probably one of the greatest barriers, since it is difficult to feel like making love when you are in pain. But there are likely to be ways to keep it from destroying your sex life. For example, taking your analgesic before lovemaking may help reduce the pain.

Creativity in seeking comfortable positions during intercourse can also help reduce or prevent pain and/or make up for weakness or limited movement in certain joints. When there is hip, knee, or back involvement, traditional lovemaking positions may be uncomfortable or impossible. To make lying on your back more comfortable, you might try placing pillows under your knees to relieve back stress. A side-lying position might be more comfortable if one of you has knee problems. For a man with hip problems, having your partner on top may be more comfortable. The point is, don't be afraid to experiment with different positions to find one that is comfortable for both of you.

To help keep fatigue or stiffness from getting in the way of pleasurable sexual activity, try planning ahead for sex. If fatigue is a factor, consider having sex in the morning, when you are more likely to be rested. If you have severe morning stiffness, try the afternoon or evening for sexual activity. Taking a warm bath or shower may also help ease stiffness enough to keep it from interfering with pleasurable sex.

The physical effects of arthritis can also have an emotional impact on sexual relations. A change in appearance or a decrease in mobility or energy level can affect self-image and self-esteem. The person with arthritis may feel less desirable or more fragile. The fear of pain can cause anxiety that makes it difficult for the person to relax and enjoy sex. The partner of the person with arthritis may also be affected emotionally. He or she may worry about causing pain.

These emotional effects of arthritis can be conquered by talking openly and honestly. By expressing your fears, you allow your partner the chance to reassure and support you, and you allow yourself to let go of fears that are not warranted. It's important to talk about these issues early on. Otherwise, one partner's fear or discomfort may be taken as rejection by the other partner, causing greater distance and emotional pain. You might even consider discussing these issues with a qualified therapist who has experience with arthritis patients.

Probably the most important aspect of a healthy, pleasurable sex life, however, is the recognition that sexual interaction demands the integration of body, mind, and spirit. Your inner thoughts and your ability to communicate with yourself and your partner have a major influence. A healthy sexual relationship requires trust and compassion.

Developing a trusting, loving sexual relationship is challenging for most of us, and for the person with arthritis, it may be more so. Try to take small, slow steps to nurture this process and recognize that sensuality does not always take the form of sex. Having a romantic meal together in a sensual environment, listening to music you both enjoy, bathing or showering together, relaxing in a hot tub, and massaging and caressing each other can all be pleasurable and intimate experiences. Even a gentle touch when your mate is in pain can bring closeness and convey concern and love. Finding ways to overcome the challenges arthritis causes can eventually lead to new self confidence and greater fulfillment for you and your partner both sexually and emotionally.

While your most significant bond will always be with your partner, unless they also suffer from arthritis they will never fully understand what you are going through. In the next section, we will explore arthritis support groups and how a community of peers can help you cope with the disease.

This information is solely for informational purposes. IT IS NOT INTENDED TO PROVIDE MEDICAL ADVICE. Neither the Editors of Consumer Guide (R), Publications International, Ltd., the author nor publisher take responsibility for any possible consequences from any treatment, procedure, exercise, dietary modification, action or application of medication which results from reading or following the information contained in this information. The publication of this information does not constitute the practice of medicine, and this information does not replace the advice of your physician or other health care provider. Before undertaking any course of treatment, the reader must seek the advice of their physician or other health care provider.

 

Throughout this article, we've highlighted the need to get accurate information about your disease so you can understand it and be better able to take proper care of yourself. We've also emphasized the need for emotional support to help you cope with arthritis. Support groups can be excellent resources for meeting both those needs.

For the person who has recently been diagnosed with arthritis, a support group can be a vital part of the process of coming to grips with the disease and learning to take steps to control it. Other people with similar problems, concerns, and experiences can help educate and support you during difficult periods. Often, they can provide insights into coping as well as practical tips on managing daily activities.

However, if newly diagnosed, you may be overwhelmed during your first few meetings, because you may not yet be able to absorb all of the realities of having arthritis. Or you may see others with more severe limitations than yourself and be fearful of developing similar problems. If you stay with a group, these fears will usually fade as your knowledge increases.

Choosing a support group that is right for you may take some effort. There are many types of groups, and many styles and approaches. Some groups may be designed for the older adult with arthritis, while others may be geared to the younger adult with rheumatoid arthritis. Some programs are education-oriented, with a variety of informative presentations, and others focus on open discussions about problems or feelings. Try more than one format if you don't feel comfortable in the first group you attend.

Look for a group that is connected to the Arthritis Foundation, a medical facility, or health-care providers. Consider a group with a lay coordinator (someone who has the disease) and a health-care professional who helps facilitate the group. Information about these groups can be found in newspaper listings, through local hospitals, or through your local Arthritis Foundation.

The Arthritis Foundation

The slogan of the Arthritis Foundation speaks to the goals of the organization...Your Source for Help and Hope. The Arthritis Foundation is the only national voluntary health agency seeking the cause, prevention, and cure of the many forms of arthritis. You'd be wise to tap into this valuable resource by joining your local chapter.

Formed in 1948, the Foundation's main purpose is to serve Americans who have arthritis, their families, and the health professionals involved in the care of rheumatoid diseases. The national office, located in Atlanta, facilitates the operations of more than 65 chapters nationwide.

The Foundation's mission includes helping people with arthritis to maintain as high a level of independence as possible. This is promoted through telephone counseling, self-help courses, exercise programs, equipment loans, support groups, and a medication-discount program. The Foundation sponsors programs in public and professional education and helps support individuals studying for careers in rheumatology. The Foundation's work also includes patient advocacy through organized lobbying of legislators on the state and national levels on issues pertinent to arthritis.

Local chapters may vary somewhat in the specific types of programs they offer. However, services generally include: information, referral, counseling, patient education, support groups, exercise programs, fund raising, and support for research in the field of rheumatology. In addition to free literature on a variety of subjects, most chapters offer a physician referral list of rheumatologists in your area, statements on controversial treatments, and information on community resources and volunteer activities.

Your local chapter may have a newsletter that can direct you to programs and community activities and locations of aquatic programs and self-help courses. Membership in the Arthritis Foundation also includes a subscription to the Foundation's national publication, Arthritis Today. This monthly information magazine helps keep you current on new treatments, medications, research breakthroughs, and other issues. Visit their website at arthritisfoundation.org.

Some arthritis patients might feel most comfortable at home where they have set up their house to accommodate their disease. While this is a natural tendency, it should not stop you from enjoying everything that life has to offer. In the next section, we will show you how to travel safely with arthritis.

This information is solely for informational purposes. IT IS NOT INTENDED TO PROVIDE MEDICAL ADVICE. Neither the Editors of Consumer Guide (R), Publications International, Ltd., the author nor publisher take responsibility for any possible consequences from any treatment, procedure, exercise, dietary modification, action or application of medication which results from reading or following the information contained in this information. The publication of this information does not constitute the practice of medicine, and this information does not replace the advice of your physician or other health care provider. Before undertaking any course of treatment, the reader must seek the advice of their physician or other health care provider.

You wouldn't think of taking a trip without packing at least some self-care items. And chances are, you wouldn't go on vacation without making at least some plans to ensure your comfort and enjoyment. For the person with arthritis, such advance planning is essential to a safe, comfortable journey.

Here is a "travel bag" of joint-friendly travel tips:

In the end, what you need to do to live well with arthritis is not that different from what all people need to do to cope well with the peaks and valleys of life. Granted, arthritis introduces more rough roads and more detours. But it can also teach you to take better care of yourself, to find new ways of viewing and dealing with adversity, and to look forward to and enjoy each and every good day. That's what wellness is all about.

ABOUT THE AUTHOR:

Diana L. Anderson, Ph.D., is the author of 50 Ways to Cope with Arthritis and a past First-Vice President of the Association of Rheumatology Professionals. She is the President, CEO and founder of D. L. Anderson International, Inc., parent company to subsidiary D. Anderson & Company, a patient recruitment and retention provider and is recognized internationally as an expert in her field. For more information, visit her website at www.dandersoncompany.com.

ABOUT THE CONSULTANTS:

Eric Gall, M.D., is a professor and chairman of the Department of Medicine, professor of microbiology and immunology, and chief of the Division of Rheumatology at the Chicago Medical School of Rosalind Franklin University of Medicine & Science. He is a master of the American College of Rheumatology and the American College of Physicians and former president of the Association of Rheumatology Health Professionals. He has a long-time interest in multidisciplinary care of arthritis and is active in both the national and local chapters of the Arthritis Foundation.

Paul Katz, M.D., is Professor and Vice Chairman, Department of Medicine and Chief of the Division of Rheumatology, Immunology and Allergy, at Georgetown University Medical Center. Dr. Katz serves on the Council on Education of the American College of Rheumatology and is a member of the Government Affairs Committee of the Arthritis Foundation.