About Lupus

Your Doctor, Your Partner in Health

Lupus is a lifelong disease. It may get quiet and go into remission, but it doesn’t just go away for good. To deal with this uncertainty and all the health problems that can come up when you have lupus, it’s worth spending the time and effort to form as strong and positive a relationship as possible—a partnership—with the people who will be treating you along the way.

Here are some tips for improving your partnership with your doctor—rheumatologist, cardiologist, dermatologist—as you prepare for your next visit:

Get there on time
Making it to each appointment on time shows your doctor that you value his time and advice. It also gives you the time that you really need—and deserve!—to be checked out thoroughly and tell him about any concerns that you have.

Be informed
Learn as much about lupus on your own as possible. Websites like www.LupusNY.org offer up-to-date information to help you better understand the disease. Doing this also shows your doctor that you are interested in your health and can talk about advances in treatments and what they mean to you.

Communication is the key
Focus on speaking clearly, asking questions and really listening. Ask how best to contact the doctor between appointments. Should you call the office? Is it OK to send an email? And be open and honest. You should feel comfortable telling your doctor about any changes in your life, since so many day-to-day things, such as added stress or even lack of sleep or changing your diet, can increase your risk for having a flare.

Keep track
Between visits, keep track of how you feel and make a list of questions to ask at your next appointment. During your visit, take notes and be sure you understand prescription and dosage instructions. If you find it awkward to take notes or you feel like you miss things, ask if you can tape the visit—so that you can replay instructions and advice when you get home.

Family matters
Ask a family member or friend to go with you to your next appointment to take notes, ask questions or mention things that you might not think of on your own. And just as important: your doctor will get to meet the people in your support system.

Be a familiar face
Your doctor has a staff of nurses, assistants, and more to care for you at your appointment. Make the effort to say hello and develop a relationship. They are the ones who schedule the appointments, call in prescriptions, and generally keep things going. And your doctor will probably notice that you take the time to be extra respectful and courteous to his staff.

Get a second opinion
If you are unhappy with your doctor-patient relationship, tell your doctor. See if she has ideas on what you can do to make it work better. If things don’t improve, contact the Lupus Cooperative of New York for a referral to another doctor.