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:
Amanda Greene, 43, stashes a tube of sunscreen in her purse and car so that she can reapply it throughout the day -- as frequently as some women touch up their makeup. Using sun protection is second nature for Greene, who was diagnosed with lupus (SLE) at 15 and is photosensitive.
"I use it from head to toe 365 days a year, whether it's gray or sunny," says Greene, a Los Angeles lupus advocate. "Some women reapply lipstick -- I reapply my SPF. It's part of living with lupus."
Women who have lupus...
anger or depression over the loss of your former good
uncertainty about what to tell family, friends, or
guilt for having lupus and the burden it may cause your
fear that you may lose your job if you can no longer work
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
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.
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
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 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.