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Getting the Most Out of Your Relationship with Your Lupus Doctor

by | Jun 24, 2024

How to Get the Most Out of Your Relationship with Your Lupus Doctor

By Maria J Antonelli, MD

A person finds himself or herself in a vulnerable position when they seek medical care. They are asking for advice on what is going on with their body, figuring out their disease, and asking what they can do to feel better or live their best life. I have found through my decade of practicing medicine that it might take months or even years to develop enough trust for patients to tell me their true concerns. It’s sometimes years into a relationship before I hear their deepest fears about why they aren’t taking their medicines, what trauma they have suffered, or why they continue to smoke. Unfortunately, a lot of physicians pass judgment on their patients and voice that judgment which creates barriers to trust-building. There are easy excuses: many physicians are burnt out, have to see too many patients per day, and get frustrated by patients who don’t “do what they’re told.” But this is unacceptable. We, as physicians, should all do better: NO physician should project his or her frustrations onto the patient. I always assume my patients are taking their medications regularly. However, if I don’t know if my patient is taking their medication or not, it quickly adds a sticky layer of complexity to figuring out what might be going on. Many medications used to treat lupus suppress the immune system, but also come with a host of other side effects: causing weight gain, swelling, and fatigue. Sometimes lupus medications don’t immediately make a person feel better. Sometimes these medicines treat things that are hard to see, like the kidneys or low blood counts, and even if they DON’T cause unwanted side effects, they don’t necessarily make a person feel better at all! I can understand why it’s hard to want to take a medicine that doesn’t feel like it’s doing anything! This article touches on some of the most common issues and concerns I see that occur with my patients. Below are some tips to keep in mind as you (or a loved one with lupus) approach lupus care with your rheumatologist and primary care physician.


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