About Lupus

Diagnosis Lupus: Next Steps

You have just been diagnosed with lupus. Now what? 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. There is no right or wrong.

After years of working with people diagnosed with lupus, the Lupus Cooperative of New York often recommends the following first steps for coping with this new information.

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 whatever complications you may have. The Lupus Cooperative can help you find able and accredited doctors in your community.

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.

For more on deciding what to tell your employer about your lupus, or to apply for disability, talk to a Lupus Cooperative outreach coordinator or call the Equal Employment Opportunity Commission at 1-800-669-4000.

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. Talk to your doctor or the Lupus Cooperative for tips on handling the side effects.

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 ways 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 information from the Lupus Cooperative 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. We run support groups across the city and at various times.

Click here for details. It’s why we’re here!