|Autoimmune Diseases and Disorders
Coping With An Autoimmune Disease
American Autoimmune Related Diseases Association
When you are diagnosed with a serious chronic autoimmune disease, it is normal to question your well-being and your mental ability to cope with the life changes that are part of living successfully-with any serious chronic illness.
A few basic suggestions are crucial for you to consider in order for you to manage your illness better.
Understand your illness and the treatment plan established by your physician. Ask questions of your doctor about your particular condition, especially what changes and symptoms you can expect to encounter.
Following the treatment plan designed by your physician is vital. If you are unsure of the treatment plan, do not be afraid to ask questions or even get a second or third opinion. Ask questions about the side effects of medications and medical tests and the effect or benefit they will have on your condition.
Let your doctor know if some new symptom is occurring. Persons with chronic illness often feel that their doctors are going to think they arechronic complainers if they are honest about how they are feeling. They may worry that their doctors will simply give them more prescriptions, adding to the many medications they are already taking. Another fear patients may have is that if they complain too much, their doctors may not want them as patients. It is much better to discuss what is going on and how it might be treated than to worry about what the doctor will think.
In short, don't be intimidated by the medical proffession. Remember, your doctor is your partner in fighting your disease. Be honest with your doctor. You hurt only yourself if you are not up front with your physician. Play a role in your treatment plan. Once satisfied that is right for you, follow it.
Fatigue may accompany many of the autoimmune diseases. Learning how to pace your activity level can put you in control of your illness. It is important to listen to your body and stop before you feel you are tired. Pacing your activity can help you sustain a relatively normal and consistent energy level. Patients often feel guilty if they slow their pace and therefore rest only when they are not feeling well or are very tired. This forced rest period can last a few days and patients then try to "catch up" and accomplish all they were unable to do during the time they were resting.
The cycle of high activity and prolonged rest periods can interfere with managing of the disease process and, with some autoimmune diseases, create a need for more medication to control the constitutional symptoms that accompany those illnesses. By learning to spread out your work load, you will be able to accomplish as much while feeling better both physically and emotionally.
If you have an autoimmune disease that requires a special diet, following this diet is very important. Doing so can play a major role in the management of your illness and your sense of well-being Learning the ins and outs of nutrition and healthy food preparation puts you in control of your diet and, in turn, better management of your disease.
You can expect to have a variety of emotional responses. Typically, newly diagnosed patients feel the "anger, denial, bargaining, depression and acceptance" cycle identified by Kubler-Ross as a response to coping with a significant loss and major life changes. You may feel isolated from others and experience fear of the unknown future.
Understanding these responses and their causes will help you determine what works best for you in overcoming them. Be open and forthright with those around you. It is important that you do not blame everything that goes wrong on your illness.
Use "I" messages with others. If you are not feeling well, say "I'm not feeling well and I could really use your support." "You" messages are usually interpreted defensively and get in the way of the real issue, which is your need for support. It's okay to lean upon your support system when you need to.
Chronic illness often has so many ups and downs that it can be emotionally draining. How you handle this emotional roller coaster is very important and personal. Some of the techniques may involve: trying to keep up a normal life-style, pacing yourself and your activities, using relaxation techniques, covering up your pain, and joining support groups. You must find out what works best for you. Understanding that your emotional state, and trying to cope, can be fatiguing in themselves is a step in the right directio.
Give yourself and your family time to adjust. Nobody adjusts overnight to something that may significantly impact on the rest of his or her life. Viewing life with a serious illness as one more of life's challenges is helpful. Understanding that you might experience feelings of worthlessness, depression, anger and self-pity, and that it is normal to experience these feelings, helps you master coping techniques.
Joining a support group for persons with chronic illness is very helpful to many patients. Professional counselling may be in order if you are unable to cope in spite of every effort to do so.
Understand that you did nothing to cause your illness and that life is not always fair. Bad things do happen to almost everyone at sometime in a lifetime. It is how we deal with these life changes that makes the difference between a life of coping and a life of moping.
Dealing with the emotional aspect of having a chronic illness is a challenge. Often the unpredictability of a serious illnes makes you feel out of control of your life and well-being. This can cause anxiety for both you and your family.
Managing Your Fatigue
by Teresa Brady, Ph.D.
Fatigue is common in chronic illness. Managing fatigue is an important component of learning to live with a chronic illness. Fatigue can lead to depression, anger, a loss of physical and cognitive skills and a lack of motivation. Sleep can also be a problem. Work simplification and energy conservation help reduce fatigue.
There are five strategies to help manage fatigue by conserving energy and using it wisely - planning, positioning, pacing, prioritizing and adaptive equipment.
One needs to think things through and plan one's time on a daily, weekly and monthly basis. Try to distribute strenuous work throughout the day rather than doing it all at one time. Try to rest before doing hard work. Plan specific tasks to do them most efficiently. Try to eliminate extra trips. Recreation is important, so plan to spend some energy on fun activities.
Use the body in good alignment and it will use less energy to do a task. Maintain good posture to take the strain off joints. Use a wheeled cart around the house and sit while working to conserve energy. Arrange work and storage areas to be more efficient.
Pacing is difficult but important. Try to avoid a rush - it just uses up more energy. Rest before you tire. It is most efficient to rest ten minutes out of every hour, but most people have trouble fitting that into their daily routine. It is usually possible, however, to add some additional rest during the day. Spread work throughout the day with planned rest breaks. Alternate light/heavy, sitting/standing and fast/slow activities.
Be selective about activities. Prioritize which tasks are essential to get done, which can be eliminated and which can be delegated. Try to simplify so that which needs to be accomplished can be done in an easier fashion. Stand back and look at the situation - then reorganize.
Use labor-saving devices and adaptive equipment that will conserve energy. Look for short cuts. Use convenience foods like cake mixes and adapted equipment like jar openers to make the job easier. Changing habits for energy conservation seems awkward at first but becomes easier over time. It is also possible to reduce fatigue by building energy resources and addressing psychological factors.
Systemic diseases can produce fatigue, so try to keep the disease process under control. Use medicines properly.
Exercise to stay in good condition. Emphasize exercise as well as rest. One loses 3% of one's strength for each day of inactivity. Strive for an energy-building program of gentle aerobics that doesn't strain the body. Swimming, bicycling (indoors or out), cross-country skiing, roller-blading, fast walking and dancing are good activities. Try to work exercises into your daily routine. There may be some initial discomfort when starting, but avoid overkill, pace yourself and rest as necessary. Expect only slow and gradual improvement.
Fatigue is depressing and depression is fatiguing. Fatigue can be a symptom of depression which is common in chronic disease. Significant depression should be evaluated to determine if medication is needed.
Continually striving for perfection and being harsh and demanding of oneself also leads to fatigue. Those who set unreasonably high and rigid standards for themselves become depressed and fatigued when they can't meet the standards. They are never satisfied. They can exhaust themselves struggling to meet unreasonably high expectations.
When feeling frantic, take a break and rest for a few moments and think the situation through. Things will go better and will be less fatiguing. Examine expectations and try to determine whose they are - yours or someone else's. Don't wear yourself out meeting expectations that are unreasonable or are not important to you.
Take what limited energy you have and learn to use it wisely. Try to accommodate fatigue since it will be difficult to conquer. Try not to be so independent, and don't be afraid to ask for help. Build your energy resources through exercise and make changes to help deal with the psychological component of low energy - a better quality of life will be the result.
(Dr. Brady is a licensed psychologist and an occupational therapist who has worked extensively with connective tissue diseases in a variety of settings. She is Executive Director of the Minnesota Arthritis Institute.)