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Lupus
Living With Lupus
Lupus: A Patient Care Guide for Nurses and
Other Health Professionals Chapter 7, Patient Information
From the National Institutes of Health
Living With Lupus
You have recently been diagnosed with a disease known as systemic lupus
erythematosus (SLE). It has probably taken time to arrive at this
diagnosis. Now that you know, you may feel relieved but also
overwhelmed. You probably have a lot of questions about lupus.
You may have a mild or a more serious form, but no matter how severe
your lupus is, you will need close medical supervision. You may also
need to make lifestyle changes to keep your disease under control and
feel as well as possible. At the beginning, you may feel some of these
emotions:
- anger or depression over the loss of your former good health,
- uncertainty about what to tell family, friends, or coworkers,
- guilt for having lupus and the burden it may cause your family,
- fear that you may lose your job if you can no longer work
regularly, and
- fear that you may die.
These are all normal feelings, and you are not alone in having them. You
should give yourself time to adjust to your illness. This may or may not
be easy for you. Discuss your feelings and concerns with your doctor and
nurse and with your family and friends. Sometimes, talking with other
people who have lupus is helpful. If you are having a hard time
adjusting to your diagnosis, consider seeking the help of a counselor.
Many physical and emotional issues confront people with lupus, both in
the beginning and throughout the course of their disease. The most
common issues include the following.
Fatigue: Fatigue is a chronic problem that is usually accompanied
by joint pain and stiffness. It can affect many aspects of your daily
life.
Changes in personal appearance: You may experience changes in your
personal appearance. Discoid lupus (a form of lupus) may cause sores,
blotches, or scarring on the face, arms, shoulders, neck, or back. The
medications for lupus can also sometimes change your appearance. For
example, corticosteroids can cause weight gain, excessive hair growth,
or swelling. Some drugs may cause hair loss. These changes in the way
you look can be emotionally challenging to deal with.
Changes in physical ability: Many people with lupus feel isolated
because their fatigue and need to rest keep them from maintaining normal
work and social schedules. You may feel frustrated if you can't
participate in outdoor activities with family or friends because of
sensitivity to the sun. There will be times when you may feel it is
easier to stay home than to make plans and later cancel them because you
are too tired or not feeling well.
Psychological effects of corticosteroids: Corticosteroids are
used to treat many of the symptoms of lupus that result from
inflammation. Their use can cause anxiety, mood changes, forgetfulness,
depression, personality changes, and other psychological problems. You
need to know about the possible side effects of these drugs while you
are taking them. It is also important that your family and friends
understand the effects of these drugs so that they can be supportive if
you should experience any side effects.
Depression: You may feel sad or depressed at times in your
struggle to control lupus or because of the medications you take. Good
communication with your doctor and health care team, as well as with
your family and friends, is important in helping you cope with these
feelings.
Concern for the future: Because the future and course of your
disease are unknown, planning for your job, your family, and life in
general can be difficult at times.
Family concerns: Like you, your family can be overwhelmed about
your diagnosis and may have a difficult time understanding and adapting
to your disease. They may feel confused, helpless, and afraid. Because
of your physical limitations, traditional roles and responsibilities
within the family may need to change. It is important that everyone talk
openly and honestly with each other. It is also important that your
family learns about your disease so they can better understand your
physical and emotional condition and the changes in your family that may
result.
CARING FOR YOURSELF
- Learn as much about lupus as possible.
- Understand that you will experience a variety of emotions,
particularly when you are first diagnosed and adjusting to the fact
that you have lupus.
- Adopt a positive attitude.
- Evaluate your personal strengths and resources, such as family,
friends, coworkers, and community ties.
- Determine what your needs are, then make a plan to address them.
- Don't be afraid to set goals for yourself, but be flexible.
- Learn how to manage the physical aspects of your disease and the
effects they have on other areas of your life.
- Learn to deal with stressful situations, because stress and
anxiety can make your lupus symptoms worse.
- Learn to talk with your health care team, family, friends, and
coworkers about lupus and the effect it has on your life.
- Don't be afraid to seek help for yourself or your family.
REMEMBER: Living well with lupus is possible. It
is important that you take control of your illness and not allow it to
take control of you. Adopting a positive attitude and striving to be
happy can make a big difference in the quality of your life and that of
your family and friends.
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