About Lupus

What to Do with a Lupus Diagnosis

Maybe you are relieved to finally know what’s wrong. Maybe you are scared, because you don’t know what it really means to have lupus. Maybe you are not sure what to feel.

While lupus can be disruptive to everyday life and even be life-threatening, the good news is that, with the correct medication and a healthy lifestyle, many people diagnosed with lupus can look forward to a long and productive life.

If you’ve just been diagnosed, it’s a good idea to…

Get a Lupus Doctor
Lupus is a complicated disease that can affect people very differently. Try to see a doctor who cares for people with lupus—a rheumatologist—and other specialists familiar with the complications you may have.

Watch What You Say at Work
Wait a bit before saying anything to your employer about being diagnosed with lupus. Give yourself a few weeks or more to get used to the news and learn about the disease—and how it seems to affect you. Then ask yourself, what do you gain or lose by telling your employer? Do you need an explanation for missing work days because of feeling ill or seeing doctors, for example?

Your employer has no right to ask about your medical history or condition. If you do decide to say something, keep in mind that it’s illegal for your employer to fire you just because you have lupus. And they can’t pay you a lower salary because of lupus either.
You can call the Equal Employment Opportunity Commission at 1-800-669-4000 for guidance.

Prednisone: No Easy Medicine
This very strong drug lowers inflammation and can help control lupus. It has saved the lives of people with lupus. But it also can quickly cause reactions that you might not be too happy with, such as mood swings, increased appetite, and puffiness around the face.

Be Good to Yourself
You can help yourself by trying to exercise (walk, stretch, swim, take yoga), eating healthy foods, avoiding smoking and alcohol, and getting rest. Protect yourself from the sun. Try to de-stress with deep breathing, meditation, and other methods for calming yourself.

Reach Out
For friends and family to help you cope with lupus, they have to learn more about lupus. Many might not understand just how sick you are, because you may not look sick. Brochures and other printed information from the NIH and the S.L.E. Lupus Foundation can help explain lupus, so that you don’t have to. And people at support groups may have good ideas on how to talk to people and let them know how to help you.

Remember: You Are Not Alone
Lupus is chronic and unpredictable, and can make a person feel very alone. By sharing your fears and feelings with others, you can fight off loneliness and depression. There are support groups for lupus in cities and suburban areas around the country.

What You Can Do

While much about lupus may be out of your control, there are some lifestyle measures that you CAN take to help control lupus symptoms.

  • During a flare: get plenty of rest.
  • When in remission: exercise to increase joint flexibility and muscle strength.
  • If you are sensitive to sun: use sunscreen and sun-protective clothing, and avoid the sun.
  • If rashes persist: check with your doctor about using a cortisone cream.
  • Relieve stress: support groups, counseling, talking with friends, family, and doctors can be helpful.
  • For fever over 100 degrees F: call your doctor.
  • Get regular checkups: these usually include blood and urine tests.
  • Ask questions: when in doubt, call your doctor.
  • Report any side effects or new symptoms promptly: help your doctor know when a change in therapy might be needed.

Skills to Cultivate

Think of educating yourself about lupus as an empowerment skill—one of several that people with a chronic disease consistently find make a big difference in their lives. Other valuable empowerments skills include the ability to:

  • Pace yourself, a quality that has to do with knowing your limits.
  • Communicate your needs to those who care for you.
  • Practice patience to ride out the trying times.
  • Organize your medical records and visits to physicians.
  • Prioritize your responsibilities in life (rest, exercise, work, family).
  • Cultivate a sense of humor to help you through the rough spots.

More Lupus Resources

Knowledge Is Power—What Research Breakthroughs Might Mean for You
Science Made Simple: A Glossary of Helpful Terms
Links to Other Helpful Sites