From the Archives: Fall 2006 Issue of Lupus Now Magazine
Hand in Hand – You and your rheumatologist
by Melanie D.G. Kaplan
Hillary Duffy was diagnosed with lupus nine years ago in California after she noticed her fingertips were turning red, white, and blue and she was experiencing recurring pain in her feet.
"I was petrified," she says. "I thought I was going to die." Her rheumatologist did little to ease her anxiety. "He told me, 'Just relax. Go to dinner, or go to a movie with your friends. You'll be fine.'"
But Duffy wasn't fine. She was in shock, and when she needed medication three weeks later, the doctor gave her a prescription but failed to give her dosage instructions. She ended up in the emergency room. Fortunately, Duffy, 35, who now lives in Oakton, VA, has had much better experiences with her doctors, treatment, and medication since then. During the past nine years, she realized that lupus-like other chronic diseases-requires regular, lifelong care, so she knew it was critical to build strong relationships with her healthcare providers.
"Many lupus patients are in their early 20s when diagnosed, and they are taken aback and scared," says Mark Gourley, M.D., staff clinician of the Environmental Autoimmunity Group at NIH's National Institute of Environmental Health Sciences in Bethesda, MD. "It's a major life impact. When I have a patient with lupus, I tell them it's like a marriage with your rheumatologist. You should meet every three months to check in and communicate."
Communication is by far the most important factor in building a doctor-patient relationship. Both parties must speak clearly, ask questions, and listen. The relationship will have its challenges, and becoming impatient and frustrated is easy to do. But developing a strong bond is not only possible -- it's vital. Gourley, who started Washington, DC's first lupus clinic at the Washington Hospital Center in 1997, says lupus patients' disease course can be very complicated but their issues in the doctor's office are not dissimilar to those of other patients
"The biggest complaint is that patients often feel they don't get enough time with their doctor and don't get all their questions answered," Gourley says. For the first visit, Gourley usually spends an hour with the patient, and then 20 to 30 minutes for follow-ups.
Gourley tells new lupus patients to first build their knowledge of lupus by exploring the Lupus Foundation of America website (lupus.org) or other reputable medical sites, such as the National Institutes of Health (www.nih.gov), or the Centers for Disease Control and Prevention (www.cdc.gov). He says patients should avoid clicking onto health blogs and bulletin boards that can unnecessarily alarm them. He also encourages his patients to be in touch with their signs and symptoms. "I always ask, 'Do you think your lupus is waking up?' and patients who are attuned to it will know right away."
Duffy, an inventory analyst for Sprint, moved back to the East Coast and has built relationships with a rheumatologist, a cardiologist, and a nephrologist who all know each other and share her test results and lab work. She sees her rheumatologist and her nephrologist every 12 weeks and the cardiologist once a year. She now takes seven medications and her condition is stable.
"My doctors have been very patient and supportive," says Duffy. She feels comfortable crying as well as laughing in their offices.
But no relationship is perfect, and Duffy shares one of the biggest gripes patients have about their doctors: the waiting room.
"It can be the first appointment of the day," Duffy says, "and I can still wait an hour and then another hour for lab work. But once you realize you don't have control of wait periods, you make use of your time-bring bills to pay or a book to read."
When seeking a new doctor, Duffy recommends two or three visits before deciding whether a long-term relationship is in the cards. "When in doubt, seek a second opinion," she says.
Making the Relationship Work
Taking charge of your health care starts with becoming an informed patient and a good communicator. Follow these steps to make the time spent with your doctor better for both of you:
Be committed. Keeping your appointment is the biggest commitment you can make to your physician. "It's important to go, even if you're feeling great," says Duffy. "If you can't make it, reschedule immediately."
Take notes on your symptoms. Between visits, pay attention to any blips on your radar screen so when you see your doctor you can say, "Six weeks ago I had a rash," or "I had heart palpitations," because it's easy to forget if you don't have an appointment for several months.
Do your homework and make the most of your time. Be prepared for a doctor's visit with a written list of questions so you don't forget them under stress. Also, don't wait until the doctor has one hand on the door before bringing up another issue. "It creates a bad atmosphere, because the doctor feels the visit has concluded, and then there's a new issue," says Gourley. "If you have everything written down and covered, there is better closure."
Pick up the phone. Ask questions and don't feel bad about taking the doctor's time. "I've been lucky in that my doctors have been very responsive," says Duffy. "When I call them, they call me back and answer my questions." Gourley says doctors typically spend a lot of time on the phone at the end of the day. "If patients are afraid to call the doctor, I'd ask them why and whether they had a bad experience in the past."
Share information. Be honest with the doctor if you have stopped taking a medication, and let your doctor know about other aspects of your life that may affect the severity of your symptoms, such as relationships, nutrition, or work issues. You could start by saying something like, "I've been having a stressful time with my partner and a few co-workers, and I know I've been eating a lot of junk food to help de-stress. What else can I do to beat the stress?"
Know your medications. If you are prescribed a new drug, remind your doctor of what other medications, vitamins, and herbal supplements you are taking. Don't assume the doctor will remember everything. Also find out when and how to take the new medications, and write down all medication names and dosages.
Take notes. Don't be afraid to jot things down in the office. If it is important to know specific information, write it down, ask for copies of your lab work, and make sure you understand everything about your symptoms and treatment, especially if your doctor says it in words you don't understand. It's OK to ask your doctor, "Can we go over again what that means in simple terms? I want to make sure I know exactly what you're telling me."