From the Archives: Fall 2009 issue of Lupus Now
Make the Most of Your Doctor Appointments
by Emily Wojcik
Whether it’s the first time or the 50th, doctors’ office visits can be stressful. For ideas on ways to make the most of your visits, we spoke to a teen with lupus, a pediatric rheumatologist, a young woman who was diagnosed with lupus in 1994, and a public health scientist and author. Here are their suggestions.
Get a Good Start
Approach the appointment with the right expectations. “People should expect to see a doctor who is caring and prepared to see them,” says Steven R. Feldman, M.D., Ph.D., professor of dermatology, pathology, and public health sciences at the Wake Forest University School of Medicine and author of Great Medical Care: The Handbook for Making Your Visit to the Doctor Better. He adds, “Start things off right by having a positive attitude.”
If You Don’t Know, Ask
Understanding your illness ensures you can better follow what your doctor is telling you. “There are so many sources out there for information -- your doctor, the Internet, the Lupus Foundation of America -- and it can get confusing, especially because lupus manifests so differently in different people,” says Emily von Scheven, M.D., associate professor of clinical pediatrics and pediatric rheumatology at the University of California, San Francisco. “Take this opportunity to ask about new research on lupus and any new treatments that might help you.”
It can be easy to feel overwhelmed, because the doctor usually has a lot to cover in a short time. “If you bring specific questions to your doctor, he or she can help frame the disease in the context of your treatment,” says von Scheven. This is particularly important for ensuring that you take medications the right way and at the right time, and that you fully understand the details of your treatment.
What if, like many people with lupus, you see multiple specialists? How can you keep all of it straight? “I have a wide range of symptoms, so I see several different practitioners,” says Courtnay Stout Brown, 34, a graduate student and freelance writer who was diagnosed with lupus in 2004. Brown says that making a plan before each visit and taking notes while she’s there help her stay in control. “I try to write down what I want to ask,” she says. “This is what I want to talk about; these are my questions; this is the framework of this appointment.”
Antoinette Cummins, now 21, from Crofton, MD, had three years of health problems before being diagnosed with lupus in 2004. Today she uses her BlackBerry to follow research news from the LFA, as well as other lupus activities and updates on Twitter. “If new information comes up, I write it down in my BlackBerry notes, which I bring with me so I can ask my doctor about it. Sometimes I bring new ideas to her attention,” Cummins says.
Establishing a dialogue can help your doctor address issues that are important for you, and it also shows you take your treatment seriously. This can be especially important when addressing issues, such as alternative therapies, that can be uncomfortable to discuss.
“Remember that you’re asking your doctor to go against a traditional medical way of thinking,” says Feldman. “But some therapies can interact with medications, so it’s important to let your doctor know if you’re using them. You never want to hide something like that from your doctor.”
Feldman recommends starting a conversation this way: “One reason I see you is because I know you’re up on the science. I’m interested in alternative therapies, too, but don’t want to interfere with your treatment. What would you suggest?”
“Your doctor should be willing to discuss these issues with you,” Feldman says.
Act Your Age
Cummins says it was frustrating and confusing to get to the right diagnosis and to be treated for lupus as a teenager. “It was difficult because my body was a child’s body, but my mind wasn’t a child’s mind. The doctors would talk to my mom but not to me. It felt like I was just a body, and like I wasn’t being informed,” she remembers.
Von Scheven says that having a parent in the room can make things easier for teens but that they also might find it useful to speak with their doctors alone. “If you’re an older teen, try to see your doctor without your parents at least once, so that the doctor communicates directly with you,” Cummins advises. “Plus, it can be much harder to be honest with your doctor about personal issues, like sexual activity or social habits, in front of your parents.”
It’s also good practice for adulthood. “Take a look at what your parents currently handle for you, and see what you can begin to do on your own,” von Scheven recommends. “After all, you’re going to have to learn to do it someday.”
You don’t have to be a teenager to feel overwhelmed by a visit to your doctor. Even the most well-intentioned physician can seem intimidating, especially if you’re already confused or in pain. When seeing doctors who seem rushed or distant, Brown says, having an ally can be crucial. “I brought my husband with me to one doctor because she had said some things that upset me, and I felt like I couldn’t face her again by myself. Just having him there was comforting because I felt like I had an ally, and that made all the difference.”
It Takes a Team
“Everyone with lupus needs to create a team -- your doctor, your parents, your friends, maybe a physical therapist -- who all work together and contribute different skills and expertise,” von Scheven says. “We can’t make the best decisions for you unless we know what’s going on and can communicate.”
Take advantage of patient advocacy group Web sites, like the LFA site at lupus.org. “There’s no way realistically for any doctor to share every aspect of a disease and its treatment with each patient,” says Feldman, “and advocacy groups are great resources for education about new research and for providing support. And they help doctors do what doctors want to do most: give patients great medical care.”
Stay in touch with other people in your situation. The LFA social networking opportunities include Facebook, MySpace, Twitter, and message boards with threads on many topics. “I wish I had hooked up earlier on with a support group or even just talked casually with people who had lupus. I really avoided doing that at the beginning, and I wish I hadn’t,” says Brown. “I think that I avoided it because I was afraid of what I might find, but I know now that many people who are living with lupus are not just surviving, but thriving. It would have helped if I had realized that sooner.”
However you approach your doctor’s office visits, remember that your relationship should not feel combative. “There may not be a cure for lupus,” Feldman says, “but gaining control over the disease should be a reasonable expectation.”
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