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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.
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