How does arthritis change lives?
Almost all people who have arthritis find that it affects their lives in some way. It can affect their everyday activities their jobs their financial resources or their relationships with family and friends.
Arthritis is not easy to live with but there is much you can do to change overcome or cope with the problems it presents. Your doctor and other members of your health care team can recommend medications special exercises joint protection techniques and devices and other self-care activities. Keeping a positive attitude is also important. A positive attitude will let you see solutions to your problems in a better light.
How can a person with arthritis cope with it?
Use mental exercises and things you enjoy doing to relieve stress. Talk about the changes arthritis brings and share your feelings with family and friends.
When should a person with arthritis ask for help?
Ask for help when you need it.
Depending on yourself is important. But there may be times when you'll need assistance. Remember it's okay to ask for help. Your family or doctor therapist or nurse friends or religious group and many other community agencies are close at hand-ready to help you when you need them.
While it maybe hard to admit that some things are more difficult to do than before it is important to get help when you need it. This is especially true for activities that place a lot of stress on your joints. Your family and friends will understand you better if you share your feelings with them and let them know how they can help you.
You may even find that your family and friends have some of the same emotional reactions to your arthritis as you do. They may feel shut out or frustrated when they aren't able to help. Tell them that the amount of pain and stiffness you feel varies throughout the day and from day to day. Using a scale from one to 10 to describe feelings helps family members and friends understand changes in severity. Try to involve your family in decisions about sharing chores and making new arrangements of shelves and furniture. Ask your friends for their understanding if you have to change or postpone plans you've made.
Arthritis may affect you in many ways from what you can do to how you look. Daily tasks maybe harder to do or may take longer. Arthritis may change the shape of your joints or how your skin looks but most people won't be able to tell by looking at you that you have arthritis.
You are the best manager for your arthritis. Being a good arthritis manager means knowing what to expect. It also means planning your activities for your best times or days. And it means learning how to work with your doctor as a team. This includes discussing changes in your abilities as well as what works and what doesn't.
You can help yourself feel better. You can learn to manage your arthritis symptoms and how they affect your daily activities. You can also learn skills to help manage how arthritis affects your emotions and your family.
Symptom-management skills use problem-solving methods to help you identify and overcome difficulties with daily tasks. You can learn skills to help you exercise and use heat or cold. You can protect your joints and pace your daily schedule to reduce joint
Good body mechanics
Body mechanics are ways to use all your body parts wisely. They include learning how to do daily activities in ways that are less stressful to your joints. These body mechanic tips will help reduce your pain.
Use good posture
Good posture is putting your body in the most efficient and least stressful position. Poor posture is more tiring and adds to your pain. Using good posture protects your neck back hips and knees.
Your entire body helps you stand correctly. Imagine a straight line connecting your ears shoulders hips knees and heels. Remember these rules for other parts of your body: slightly bend or unlock your knees; tighten your stomach muscles; tuck your buttocks under; hold your shoulders back; tuck your chin in a comfortable position; stand with your feet apart and spread slightly or with one in front of the other to keep your balance.
Standing this way will help prevent pain. If standing for a long time becomes painful lean against a wall or put your foot up on a stool. Both of these actions flatten your back and prevent slouching.
Your spine should also be stable and supported when you sit. Use these tips to sit correctly: use pillows or a rolled-up towel to support your lower back; place your hips knees and ankles at a 90 degree angle (maybe with a footrest); hold your shoulders back; tuck your chin in a comfortable position.
Your shoulders should be relaxed with your arms at your side elbows at a 9O degree angle or lower and your wrists straight. When working at a desk or counter you may need to use an adjustable chair to position your joints for different work surfaces. Sit in a higher chair if it is difficult to sit down or stand back up. When reading use a book stand to avoid neck strain when you look down.
Lying on your back
Sleep with a small roll in your pillowcase or use a cervical pillow to avoid stressing your neck or neck muscles. Avoid using pillows under your knees.
Lying on your side
Use several pillows or a large body pillow to support your arms and legs.
Distribute your load
Use your large strong joints and muscles and spread the load over stronger joints or larger surface areas. Carry a purse with a shoulder strap rather than carrying it in your hand or use a fanny pack. This protects painful elbow wrist or finger joints. When you lift or carry things use the palms of both hands instead of your fingers and your arms instead of your hands. When using stairs go up with your stronger leg first and go down using your weaker leg first. Always use a handrail if available.
Use body leverage
Lift or carry things close to your body. Holding items close to the body is less stressful. Slide objects whenever possible instead of lifting them.
Move or change positions often
Keeping muscles and joints in the same position adds to stiffness and pain. Do a quick check of your jaw neck shoulders arms wrists fingers hips legs ankles and toes. Stretch and relax areas that are tired or tight.
Other body mechanics tips
Extra pounds put more stress on your hips knees back and feet. This extra stress can lead to further joint pain and damage. If you are overweight ask your doctor for advice about a weight loss program combining a healthy diet and exercise program. You'll look better probably have more energy and feel healthier too!
Balancing rest and activity
Both work and leisure activities are important but you can overdo them. Take short breaks and alternate heavy and light activities during the day. Pace yourself by learning to balance periods of work with rest breaks so you don't place too much stress on your joints or get too tired. You may need to take longer or more frequent rest breaks when your disease is more active.
Organize your work and storage areas. Keep all equipment and tools within easy reach and at a comfortable level. Use a Lazy Susan or plastic bins to keep things close by.
Pain is one of your body's signals that something is wrong. If your pain increases during or after completing an activity or exercise then you've done too much. Be alert for pain that lasts for more than two hours after completing a task. Next time do a little less or go about it in a way that takes less effort.
Check with your doctor or therapist about different ways to manage various types of pain.
Self-help devices can take stress off your joints but always try to use your own range of motion and strength first. Self-help devices can make tasks easier and more efficient especially when you're tired stiff or in a hurry. These products can:
Using self-help products requires less energy on your part and places less stress on your muscles and joints.
Making daily activities easier
Cooking and cleanup
Laundry and housecleaning
In the bathroom
In the bedroom
In the workplace
Six steps toward solving problems
Arthritis can pose many challenges--not only for people who have it but for their families as well. Therefore it is important to understand how to solve problems and to have a basic plan at hand. The following outline gives you a step-by-step plan for becoming a successful problem-solver.
1. Understand the problem
Large problems can seem overwhelming. This can lead to feelings of helplessness. To make problems seem smaller try to separate the problem into manageable pieces. For example having trouble following your doctor's recommendations may be due to: having a poor relationship with your doctor not having enough information or not being comfortable asking questions. Then try to identify the more important or most troubling areas and work on only one problem at a time.
2. Find possible solutions
For each piece of the puzzle list all possible solutions or actions. Then think through all of your choices. Ask others for their suggestions; there is no need for you to think of all the solutions by yourself. Finally visualize what you want to see happen.
3. Evaluate your options
List the advantages and disadvantages of each option. Decide what's needed to carry out the different options and plan how you would carry them out. Then select the option that is easiest and would bring you the most benefits.
4. Put your plan into action
Now it is time to move into action. Try only one option at a time. Be realistic and give yourself enough time to carry out your plan.
5. Evaluate the results
Evaluate how your plan worked. Was it appropriate? Was it carried out as expected? Did it work? If the action didn't work quite right don't give up. See what changes would make it work better or try a different plan. If necessary go back to step 2 "find possible solutions."
6. Reward your accomplishments
Find ways to reward yourself for each step you've accomplished. For example give yourself a special treat (time to read a book or to take a relaxing bath). Or put away money for a special gift. Spend time with a friend. Anything that gives you pleasure can become a reward.
Remember too that some problems are harder to solve than others especially those that have taken a while to develop and may include many factors. Sometimes there may not be a good answer or solution in which case simply talking about your frustrations with a friend relative or counselor may be your best solution for now.
Problems with solving problems
Remember too that some problems are harder to solve than others especially those that have taken a while to develop and may include many factors. Sometimes there may not be a good answer or solution in which case simply talking about your frustrations with a friend relative or counselor may be your best solution for now.
Support from family and others
The stress of having a chronic illness may make it hard for you to see problems and their solutions as clearly or as positively as you might otherwise see them.
If you are feeling overwhelmed by problems brought on by arthritis talk with your family and friends. Also consider seeking outside support from your clergy family social worker or counseling psychologist. These professionals are trained to help people break problems down into manageable parts discover ways to solve problems ease frustrations and find constructive ways to work through their problems. Arthritis clubs and support groups are another way in which both men and women who have arthritis are able to get the support they need. These groups are helpful because most people find it easier to share their concerns and experiences with other people who have arthritis.
People who have arthritis may need legal help with issues concerning property estates trusts and rental rights. They may also need assistance with legal questions about how a family should share financial responsibilities for health care and/or long-term care for a parent or relative.
People who cannot afford a private attorney should contact the following programs: local bar association legal aid society local area agency on aging independent living center or landlord tenant advisory council. These organizations provide legal advice and/or representation in court for elderly people low income persons or people with disabilities.
Help at home
Companions or visitors
Homebound people have an additional need for companionship. Without companionship and outside stimuli the discomfort and pain of arthritis often seem worse. Friends and families may need to become more aware of these problems and realize that there are many ways to fill these needs.
Relatives could help by visiting more often. Families might also check the possibilities of finding a visiting companion. Perhaps there is a person in the neighborhood who would be delighted to visit on a regular basis and would enjoy a few hours of company now and then. Some local chapters of the Arthritis Foundation provide home visits or short-term telephone contact service. The U.S. Post Office has a Postal Services Carrier Emergency Alert Program. Many churches and family social service agencies now offer a "friendly visitor" service. Contact the various organizations mentioned above to learn about the services they offer in your area.
If a family's primary homemaker is temporarily unable to manage the household chores someone may be needed to take over the cooking cleaning and child care. Most often situations like these can be eased with help from a part-time housekeeper.
It may be especially helpful to hire a housekeeper who has had special training in managing a household where someone is ill or recovering from an illness. If medical care is also required visiting nurses and physical therapists can make home visits with a doctor's request (although restrictions may apply for people on Medicare or Medicaid). Visiting nurses can give medical care and teach the family how to provide care for the homebound person.
Attendants provide personal care homemaking services and companionship. People who are severely disabled by arthritis and live alone may find it helpful to have a part-time or full-time attendant. An attendant may be hired to stay for several hours each day or to live with the person who has arthritis.
To obtain the services of an attendant contact home health care agencies independent living centers or private Health Care contracting companies. (Medicaid and private insurance companies may or may not pay a portion of attendant care fees.)
When contacting an agency either on your own behalf--or as a concerned relative or friend--the guidelines below may be of help:
Help with recreation
Suitable recreational activities can be a wonderful outlet and a boost to self-image for all of us. Most communities now have services of this kind. YMCA and YWCA's senior centers and church programs offer organized activities and informal socializing for people of all ages and especially for senior citizens.
Help with transportation
Accessible transportation for senior citizens and people with disabilities is now available in most communities--especially those that receive federal funds for public transportation.
If getting to recreational activities is difficult the center itself often provides transportation. Or you might just as easily find a neighbor or other group member who would be happy to take you to events. (Perhaps you could provide a service in return.)
Many communities also provide door-to-door transportation services such as mini-vans or mini-buses that accommodate wheelchairs walkers and other devices. For more information contact your public transportation department or local Easter Seals Foundation.
Smaller communities and rural areas that may not furnish public transportation often provide services through their senior centers hospitals or their local government. People who live in smaller communities should contact their mayor's office or county social services agency for information on local transportation.
Help with housing
There are a variety of living arrangements for people who may or may not be able to live alone. Some types of housing are only for people with disabilities. Other types are only for the elderly while some serve both elderly and disabled persons.
For information regarding the type and location of housing options in your area call or write your local housing authority local commission or office on aging independent living center or the American Association of Retired Persons (AARP).
Financial assistance for housing
A government program called "Section Eight Housing" provides rent subsidies to people whose income falls below a certain level. A family's income and household expenses determine whether a person qualifies for this federal assistance program. Subsidy housing is often used by senior citizens or people with disabilities. For further information contact the local or state housing authority or the regional office of the Federal Department of Housing and Urban Development. (Both are listed in the phone book under "United States Government.")
Senior citizens and people with disabilities (who meet certain income requirements) have access to limited home improvement grants and/or loans. Funds can be used for roofing ramping and insulation. Some volunteer service organizations furnish free labor for home improvements. For more information contact the local housing authority in your area.
The majority of elderly people with arthritis can and do live independently. But sometimes it becomes necessary to consider placing a family member in a nursing home or a home for the elderly or chronically ill (a residential health care facility). It is important that you and your family discuss nursing home options before any decisions are made-making sure to include the family member who will be entering the nursing home. If uncertain about nursing home decisions consulting your doctor social worker support counselor or clergyman may help ease your family through the many concerns and decisions involved.
There are several types of nursing homes each offering different levels of care services and activity programs. To find out about a particular nursing home visit the facility and also check with one or more of the following:
Family members should continue to be involved with relatives in a nursing home through frequent visits. Ongoing communication with the nursing home staff will help insure a quality environment for the resident.
If a problem arises that cannot be resolved some communities have a nursing home ombudsman program. An ombudsman is a community volunteer who works with nursing home residents their families and the nursing home administrator to come up with solutions to their problems. Where available ombudsmen can be reached through the State Agency on Aging.
Services for children
Children who have arthritis often have many of the same concerns about their disease as adults. They also may have problems with school emotional adjustments treatment and family issues.
The American Juvenile Arthritis Organization (AJAO) is an advocacy service that works with local chapters of the Arthritis Foundation to help locate needed services. AJAO can help you find out about programs and services for children with arthritis. Federal and state laws protect the rights of all children to receive a public education.
Arthritis in the workplace
If arthritis is interfering with your job perhaps there are a few simple changes you could make to ease the pain and stress on your joints while working.
Consider trying the following:
If the severity of your symptoms makes it impossible for you to continue working in your present career state vocational rehabilitation agencies can help you discover new job possibilities and assist you with any needed retraining or job placement. State employment offices also provides job referrals. Neither agency charges for its services and both can be found under the "state" listings in your phone book.
For more information about job retraining consult the article on vocational rehabilitation.
Today there are educational programs for people of all ages and for all the reasons people seek education. Most college campuses and other public buildings have made changes that allow and encourage people with physical limitations to participate more fully in their educational programs.
Many institutions and organizations offer special scholarships grants or loans to people with disabilities and to people 65 or older. Other resources that offer financial aid include the financial aid department and/or the disabled student services department where you attend classes and the office of vocational rehabilitation in your area.
For more information consult the article on college and arthritis.
How do people with arthritis react?
Everyone is unique. Personalities abilities past experience reactions and concerns vary a great deal from person to person. Some people appear to handle all of their problems well while others have difficulty coping with a variety of challenges. Arthritis can be one of those challenges both physically and emotionally.
When people find out that they have arthritis they often feel a sense of shock disbelief or helplessness. After they learn more about arthritis and its treatment they may feel overwhelmed or angry. At some point most people with arthritis realize that the disease is indeed a fact of their lives. With this awareness they may become depressed.
In a sense one could compare this sequence of emotions to the grieving process. People with chronic diseases actually do "grieve" over the person they were prior to the time they were affected. In fact the grieving process often is necessary in order for people to accept change and get on with their lives. People with arthritis can take comfort knowing that the range of emotions they experience is perfectly normal.
What challenges does arthritis pose?
People with arthritis experience some changes and challenges that are different from those of people with other diseases. For example:
Adjusting to the changes experienced with arthritis takes time. However there are things you can do to better cope with the situation. With work and understanding you can learn to deal with the effects of arthritis.
Handling daily responsibilities is not easy when you are suffering from the pain of a headache or toothache. When there is chronic pain because of arthritis dealing with life's tasks can be even more difficult.
Everyone feels pain differently. Because no one can actually see pain other people may not understand how it affects you. And just as people feel pain differently they also respond to it differently. Some simply withdraw from activities because they can't predict when they'll experience pain and are afraid of making commitments they might not be able to keep. Others put far too much pressure on themselves by trying to "tough it out." Still others feel guilty about resting when they have bad days. A few people seem to get "rewards" for hurting. They use their pain to get special attention from others or as an excuse for not doing certain things.
Arthritis medications work against the body processes that cause pain. Most medications work well only if taken daily even when there are few symptoms. Applications of heat or cold to a painful joint can provide temporary pain relief. Careful use of your joints can help you avoid pain. Daily exercise can relieve soreness due to stiff unused muscles and help you maintain your range of motion. You may find activities such as swimming helpful. Remember not to overdo any exercises or activities. If pain continues for very long afterwards cut back on the activity next time.
Listen to your pain. Think of it as a signal from your body to stop rest and relax. Learning relaxation techniques can be helpful for people who find it hard to totally relax. Physical and occupational therapists psychologists and social workers with special training in teaching relaxation may be able to help you.
One way to pay less attention to pain is to concentrate on something else. Stop and consider what happens to the pain when something interesting is going on. Think about the things that keep your mind off pain. When you are doing or thinking about something interesting and pleasurable you may not be as aware of pain.
If your treatment plan for pain currently does not include medication joint protection exercise rest relaxation or heat/cold therapy ask your doctor if any of these might help you. Your doctor may want to refer you to other health professionals who can help with your pain management program.
If you frequently experience severe pain you may want to talk to your doctor about the possibility of being referred to a pain clinic or a professional who specializes in pain management. Health professionals are using many non-medication methods of pain control such as meditation and biofeedback with considerable success.
See the article on pain for more information.
Dealing with depression and anger
Feeling depressed or angry when change occurs is normal especially if the change is unexpected and unwanted. You may feel frustrated about not being able to do a favorite activity or you may feel angry if you can't keep up with your friends housework or job.
Depression often results when a person is unable to express angry feelings and keeps them buried inside. It also can be a side effect of certain medications. In addition depressed feelings can be triggered by chronic pain fatigue too much stress fear of losing the interest and affection of a loved one a sense of loss about changes in one's body or lifestyle or fear of possible future body or lifestyle changes. But in spite of these many "reasons not all people with arthritis get depressed or angry, and many learn to overcome such feelings.
If you are depressed, how does this condition affect your life? Are you irritable with family or friends? Have you stopped taking care of your arthritis? Are you withdrawing from activities and friends? Are you sleeping less or more, eating less or more, or feeling more pain and fatigue than usual? Are you paying less attention to your personal appearance? Do you find that life has no value and that your thoughts tend to be gloomy and negative? These behaviors are possible symptoms of depression and may require treatment from a professional.
There are many ways of treating depression. The catch is that depressed people often don't feel like doing the things that will help them get out of their blue moods.
If you are depressed, you may have to make yourself do things at first, but it will get easier as time passes. Making the effort to interact with other people and to leave your house are good starts toward overcoming depression. Choose activities you enjoy and people who are cheerful and fun to be with. Talking about your feelings and moods with family, friends, or clergy also can be very helpful.
Since anger can build up inside you and cause depression, it's important to learn how to express angry feelings outward in a positive way. Appropriate ways of releasing angry feelings include exercising crying keeping a journal that includes feelings speaking into a tape recorder about your concerns and talking to an understanding friend. If the anger is directed toward another person it may be best to get the matter out in the open and clear the air rather than to keep the feelings inside. This does not necessarily mean having an argument. One can learn how to discuss angry feelings without doing damage to the relationship.
If the depression persists discuss the situation with your physician. Sometimes treatment involves taking medication. If you are taking tranquilizers or drinking a lot of alcohol talk with your doctor about their possible effects on your mood. Also consider a referral to another health professional such as a counselor psychologist or social worker.
Stress is a response the body makes when called upon to make too many changes. Situations or conditions that can create stress include problems at work personal relationships raising children paying taxes the death of loved ones and new or frightening experiences. Even happy occasions such as weddings births and vacations can be stressful if there is pressure involved. You may also feel stressed when you experience one straw too many--after a series of little things suddenly seem to pile up and get out of control. People with chronic health problems such as arthritis can have additional stress because of pain medical expenses and concerns for the future.
Symptoms of too much stress include:
Symptoms differ from one person to another and may differ for the same person over time.
People can reduce stress in different ways although all stress cannot be removed from life. An important concept in stress management is to accept what you cannot change instead of feeling constantly frustrated and upset over situations beyond your control. Have reasonable expectations for yourself and other people.
Just take one day at a time and try to do something each day that is pleasant. Improve communication and learn to say "no" without feeling guilty. Simplify your life as much as possible. Build a daily exercise period into your life. To counteract some of the stress that cannot be eliminated practice relaxation techniques to clear the mind of thoughts and worries and allow the muscles to release tension.
Stress depression and pain are all closely connected and each probably affects the other. Sometimes people with arthritis develop a cycle of these uncomfortable feelings that is difficult to break.
If this cycle should occur taking steps to solve any one of these problems can reduce the extent of the others as well. In this way you can break the cycle. However if you feel trapped talk to your doctor or ask to be referred to another professional who can help.
See the article on stress for more information.
Coping with fatigue
People with arthritis often tire easily and may not be able to participate in all the activities they once enjoyed. As a result they may feel frustrated or even guilty for not getting as much done as they think they should. But with careful planning and pacing most people with arthritis still can be very active.
You can reduce your fatigue by learning to pace yourself throughout the day. Do the first task on your list and then rest for awhile before beginning another. Allow extra time to rest on days when you have big tasks or special plans. And big jobs can be broken down into smaller more manageable parts. No matter what you do stop and rest before you get too tired.
Develop priorities for yourself. How do you most want and need to spend your time? Perhaps you could give up some things you wouldn't really miss doing. Perhaps you are doing something for your spouse or children that they would be quite willing to do for themselves.
Don't try to hide the fact that you are tired or can't do certain tasks. If you do try to cover up not only might you damage your joints but your family and friends might develop unrealistic expectations of you.
If arthritis has affected your ability to do simple daily tasks such as cooking and cleaning enjoying your favorite leisure activities or working at your job or other desired activities talk to your doctor. A doctor an occupational therapist or other professional may be able to suggest aids or devices or ways of modifying activities so that you can still participate.
See the article on fatigue for more information.
Self-image and sexuality
Sexuality is an important part of life involving how one feels about and expresses being male or female as well as the many physical ways in which one can experience closeness with others. The opportunity to express and enjoy sexuality can be affected by arthritis. Although arthritis has no direct effect on the body's capacity for sexual enjoyment the disease can indirectly affect sexuality.
For example pain and fatigue can reduce your interest in being around others or reduce your interest in sexual activity. Having inflamed joints or limited joint mobility also can make engaging in certain sexual activities more difficult. And some drugs that are used to treat arthritis or other health problems may lower your sex drive or affect your sexual ability.
Self-image can be affected by body changes caused by arthritis or certain medications. A disease can change the way you look and feel but you still are the same person you were before you became ill. If physical changes do occur they will be much more noticeable to you than to anyone else. How you manage these changes is more important to your personal relationships than are the actual changes themselves. Other people "see" you through your personality posture voice and personal style of dressing and grooming in addition to your physical features.
Many of the suggestions already given for dealing with pain fatigue and limited activities can help you enjoy your sexuality. Also remind yourself that a great part of how others see you and feel about you depends on how you feel about yourself. If you don't see yourself as an attractive person others might not either.
For those who are not married or enjoying a close relationship there may be the challenge of finding a person with whom you can enjoy life. For a person with a disability or an illness the usual steps in making new friends can be more difficult. If you don't feel like going out make the effort to maintain contact with friends by telephoning them or inviting them to your home. Indicate your willingness to try to participate in whatever is going on.
Fortunately most people with arthritis are able to get out and participate in social events. Joining an activity club or an organization whose efforts are of value to you will put you in touch with people who have similar interests.
Once you have found someone with whom you wish to be close you should tell them about your arthritis in a matter-of-fact way explaining that there are some things you can't do but that there are many more things you can enjoy. Remember that any healthy long-term relationship is based on openness. All people risk rejection not just people with arthritis. If a person feels too uncomfortable to be with you after learning that you have arthritis perhaps that person couldn't give you the closeness and support you want anyway.
As a relationship develops there are many ways to communicate with your partner. You can use unspoken signals such as facial expressions and touches to get your message across but you also must be willing to talk with your partner. Unexpressed feelings can lead to inaccurate conclusions. You may feel your partner is ignoring you when he or she may actually just be afraid of hurting you. If you avoid your partner's touch because you are in pain or are very tired your behavior could be misunderstood.
When there isn't enough communication hurt feelings can build unnecessary barriers to any relationship. It is your responsibility to let your partner know how you feel just as you would like to know how he or she is feeling about you.
If arthritis does cause problems that can affect your sexual activity there are many possible solutions. See the article on sex and arthritis for more information.
Steps to making changes
If you have arthritis you may want or need to make some changes in your life.
Changes may be as minor as buying a more comfortable chair or an electric can opener. Or you may need to make some changes in your work your social life the type of sports you enjoy or the way you manage your home. And you may have to keep making changes as the needs arise.
Everyone experiences change as they go through life. Changes can be frustrating scary or challenging. This section provides ideas for managing your life and coping with the changes arthritis may bring about.
Resources are available if you or your family would like help in learning to live with arthritis.
The first person to consult is your doctor. Doctors can provide feedback about information you've been told or read regarding arthritis treatment and unproven remedies. Doctors who specialize in arthritis are particularly aware of the importance of the role of other health professionals in the overall treatment of arthritis. For instance if you have difficulty doing daily activities you may be referred to an occupational therapist. These specialists can teach you about joint protection techniques and can assist you with self-help aids and methods to make activities easier.
A physical therapist can design exercise programs to help prevent and correct joint problems and to maintain general strength. He or she can suggest techniques to lessen pain such as special applications of heat and cold.
Psychologists social workers and psychiatrists are available to help you with emotional concerns. In addition mental health professionals who specialize in sexual counseling pain management and marriage and family therapy are available in most communities.
If you have other concerns a variety of people and agencies in the community can help. Community resources include nurses vocational rehabilitation counselors members of the clergy transportation services meal delivery programs visiting health professionals homemaker services and financial and legal aid.
Once you know what needs and resources you have then you can start setting goals for yourself. Have you ever done this? Many people rush through life without taking the time to simply sit back and evaluate their choices and actions. Are you spending your time and energy on something worthwhile something that you really want to do? For some people arthritis has turned out to be an opportunity to stop and evaluate their goals in life. What do you want to achieve? Don't let society or physical limitations dictate what your goals should be. On the other hand be practical about what's possible. Break down big long-term goals into small manageable steps that can be accomplished in short amounts of time.
The strategy of contracting is especially helpful in achieving short-term goals. Essentially contracting consists of the following steps:
For example a contract might be: "This week I'll walk 15 minutes before lunch on four days."
Your choice of goals doesn't have to be final and you can always change your mind as you learn more about arthritis and how it affects you. Concern yourself with coping well today not with what might happen tomorrow.
Each of us has limitations. Those who lead full active lives learn how to work around their limitations and maximize their strengths. Take stock of your arthritis and any limits it has caused. How mobile are you? How much energy do you have and how dependable is your level of energy? Do you have any problem joints that make certain activities harder to do? It would be nice to ignore the arthritis and do whatever you want but eventually you may make matters worse by not saving your energy and using your joints wisely.
Perhaps you feel confused about what your actual limits are. Your doctor or therapist may be able to provide some guidelines about rest periods and activities. Then you will have to experiment. By trial and error you can learn what your body will tolerate. Remember that you may be able to build up your tolerance for certain activities. A physical therapist can help you set up an exercise program that can help you develop your strength and joint mobility.
You may find that you can no longer do certain activities or do them as well. If so don't dwell on your limitations; instead look at your capabilities. One way of doing this is by engaging in the practice of positive self-talk. Self-talk can best be described as those habitual things we say to ourselves. Negative self-talk can lead to increased pain and depression and to decreased activity levels ("I just can't do the things I used to do so why bother"). Positive self-talk on the other hand can help you better cope with a situation ("I'm getting better and better able to do some things. My exercises are really helping me").
Everyone has talents and abilities that can be developed. You're limited only by your imagination. Find new ways to use your skills. For example if you no longer can compete in sports you might try coaching instead. Look for ways to modify activities so you still can do them. If you love to garden but no longer can stoop or kneel see if you can get raised flower beds constructed. If knitting was your passion but arthritis now affects your hands talk to an occupational therapist to get ideas about aids or techniques to make knitting possible or suggestions about other hobbies you might enjoy. If you are having difficulties at your job a vocational counselor can help you modify your work setting or suggest other possible careers.
It's human nature to get upset if you try something that doesn't seem to work out. But use that experience to your advantage. Consider any failure you have to be a learning experience-just part of the process toward success.
Become a partner in your health care
Even when people have arthritis there still are many ways of taking care to stay healthy. In addition to arthritis treatment you need to consider such things as being at a healthy weight level limiting alcohol consumption not smoking exercising daily within your physical limitations eating a balanced and nutritionally sound diet and managing stress.
Besides physical health you need to be concerned about your emotional health. The status of your emotional health is based on a variety of factors. How well do you communicate? How do you handle anger guilt worry and fear? How good is your self-image? How are you managing your personal relationships? You'll need to address these questions on an individual basis. Some people find that they are better able to resolve such issues by seeking professional assistance.
Scientists are not yet sure what role emotions might play in the development and course of arthritis. But people with the disease say that they feel better when they have learned more effective ways of coping with the stress in their lives.
You can become a very important partner in your own health care by creating a satisfying and fulfilling lifestyle by caring for your total health and by understanding that it's normal to experience emotional ups and downs throughout life. In fact overcoming stressful situations often helps us grow and become better equipped to deal with other life challenges.
Why do other people's perceptions matter?
Many people think of arthritis as an old person's disease or something that causes minor aches and pains. At the other extreme are those people who believe that nothing can be done for arthritis and that those who get it can expect to end up in a wheelchair. You may be accused of making too much of your arthritis or viewed with pity by people who think you're on the verge of becoming totally disabled. You may feel put down if you're told what you can't do by an uninformed public or a well-meaning family member who just wants to protect you.
The negative perceptions of others may be among the most difficult challenges you have to face. When family and friends misunderstand you they may not be able to provide the support you need.
Misconceptions held by employers and the public can make it more difficult for you to work or get the services you need.
But you don't have to accept other people's ideas about you or your illness. Learn as much as you can about arthritis so you can have a realistic attitude about your condition. Then deal with people's misinformed notions in a positive fashion. At times you may want to ignore comments from misguided friends. At other times you will want to explain your condition as soon as you become aware that someone has misconceptions. In a matter-of-fact way talk about arthritis and how it affects you. By educating others you can help promote a better understanding of arthritis.
Arthritis is unpredictable
Everyone has some degree of uncertainty in life but you may have more than your share if you have arthritis. You may have to deal with the up-and-down nature of the disease. A teenager with juvenile arthritis described her frustration in this way: "On days when I feel good my family and friends forget I have arthritis. When the bad days come they think I'm exaggerating. How can I feel OK one day and so miserable the next?"
Many types of arthritis have this on-again off-again pattern. The physical effects of arthritis can change from day to day and even from hour to hour. Living with an uncertain future is very difficult.
If your disease goes into remission that is the disease process is quiet and symptoms go away those around you may tend to forget that you still have the arthritis and need to continue treatment. No one can predict when flare-ups of arthritis will occur or how long they will last. Because of this uncertainty some people continue to feel quite anxious and wonder when the symptoms will return.
If you prepare yourself for the up-and-down nature of arthritis you'll probably be able to live your life with fewer disappointments.
When the symptoms of arthritis are severe enough to keep you from doing things with family or friends let them know that although you'd very much like to do what is planned the arthritis is flaring up and you need to stay home and rest instead. For example you might say "The picnic sounds like fun but right now I'm having some pain I need to take care of. I'll join you later if I can but if I'm unable to make it please ask me again next time." Since no one can read your mind you have to put into words what your needs are. Your family and friends can be more supportive if they are aware of ways in which they can help.
One way to understand and accept the reality of having arthritis and to realize the importance of a treatment program is to learn as much as possible about the disease. Following are different challenges that you as a person with arthritis may encounter along with tips for dealing with them.
Is arthritis chronic?
Arthritis is a chronic disease. The symptoms usually can be controlled but for many people the disease remains. Being told you have a condition that's not likely to disappear can be a shock at first and the information may be hard to believe and accept. Daily treatment is necessary to keep symptoms under control. For example doctors often advise people with arthritis to take medication and to rest and exercise daily even when they feel well. Arthritis treatment may require changes in routine ways of living such as scheduling time to exercise and rest. These changes can be difficult to accept. Some people try to ignore the fact that arthritis is chronic and they avoid parts of their recommended treatment. Allowing arthritis to go untreated can result in additional damage to the body.
Some of this material may also be available in an Arthritis Foundation brochure. Contact the Washington/Alaska Chapter Helpline: (800) 542-0295. If dialing from outside of WA and AK contact the National Helpline: (800) 283-7800.
Adapted from several pamphlets originally prepared for the Arthritis Foundation one of which is by Beth Ziebell Ph.D. This material is protected by copyright.