You and Your Doctor

What to Expect from Your Lupus Doctor

Part of a successful relationship with your doctor is based on your expectations of him or her.

What are you expecting?

Before I started seeing my Lupus doctor, I spent several years getting treated by a multitude of specialists for a whole range of ailments—from pulmonary embolism to avascular necrosis, to hives and hair loss. Once my doctor figured out that it was Lupus, and referred me to my “Lupus doctor,” I had this expectation that finally I was about to meet my miracle worker—the doctor who’d make me all better.

Then, I started seeing my rheumatologist, and boy was I disappointed. I’m not exactly sure why, but meeting my rheumatologist was a let down. The sad thing is that it wasn’t her fault; it was mine. For some reason, I put her up on a pedestal, expecting that she’d not only have all the answers about how I got Lupus and why it attacked me in so many ways, but also that she’d somehow fix it right away.

Boy, did I have a lot to learn. So, with this Connect with Your Doctor post, I’m giving you a list of what you can realistically expect from your Lupus doctor. You can expect that:

  • Your Lupus doctor does not have all the answers. Yes, s/he will work hard to help you feel better, knowing that there are drugs and other treatments available to help you. Since Lupus has no cure, don’t expect your doctor to cure you.
  • Your Lupus doctor will refer you to specialists related to your specific Lupus symptoms. For some reason, I thought once I saw the doctor for Lupus, that she was it. I wouldn’t have to go traipsing off to other specialists anymore. So, when she referred me out to a dermatologist for my hair loss, I was a bit puzzled. She explained that hair loss, although related to Lupus, wasn’t her specialty.
  • Your Lupus doctor is the one you go to for the big picture of Lupus. S/he’s the overseer of your Lupus treatment. S/he monitors the Lupus activity of your body with regularly scheduled appointments to check your symptoms, prescribe medications, and test your blood.
  • Your Lupus doctor relies on you to be honest and truthful about your symptoms and the latest medical occurrences in your life. They will only know how best to treat you if you tell them what’s happening. Don’t sensor yourself, trying to figure out what’s related to Lupus and what isn’t. Tell your doctor everything that’s going on and let them sift through to determine what’s relevant or not.
  • Your Lupus doctor will be dependable and return your phone calls within 24 hours. If the doctor is not, then it’s time to consider another doctor. Lupus is often unpredictable, so it’s imperative to have a place to call should a potential emergency arise. My Lupus doctor was available during a time when I was experiencing awful abdominal pain. I was positive and sure that the pain was a side effect of my Lupus medication, Plaquenil. However, after my Lupus doctor returned my call to ask about the pain, she sent me to the emergency room immediately. It turned out to be appendicitis, and her dependability led to swift action to recommend the hospital helped to get me into surgery before my appendix burst.
  • Your Lupus doctor will examine you during each follow-up visit. S/he will be especially concerned about your joints, your breathing, your skin, and your blood work.
  • Your Lupus doctor might recommend several different medications, depending on the severity of your case. Even the mildest of medications can have multiple side effects. Your Lupus doctor should explain what to expect and warn you about the side effects that warrant stopping the drug.
  • Your Lupus doctor will want to see you at least once every three months or more often, depending on your symptoms and test results.

With these expectations in mind, you’ll be more comfortable and better able to communicate with your doctor.

What have been your expectations of your Lupus doctor? Did s/he live up to them?

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