The Challenge of Changing Doctors With Chronic Illness

I started my diagnostic journey in early 2008, nearly nine years ago. During that time, I have seen more doctors than I can remember, sometimes because I was referred to different specialties in my quest for answers, and sometimes because I moved to a different part of the country. Each time I see a new doctor, my diagnoses are refined, added to or sometimes changed.

My most recent doctor change was because my previous doctor was let go from the health center in my area. The man was an amazing clinician, but he did not like using the electronic health record system that was mandated, so I suspect that contributed to his sudden departure.

So what happens when you change doctors when you have a chronic illness? In some cases, you start over. The doctor may or may not look at your medical history, but he or she will likely want to order their own lab tests, x-rays or image studies. They may “take away” your diagnosis and put you back into the “what the heck is wrong with me?” category. After my initial diagnosis of fibromyalgia and “something else” in May 2008, I have alternately been diagnosed with chronic urticaria, cervical myelopathy, possible rheumatoid arthritis (RA), possible lupus, possible post-Lyme syndrome and I’ve had two doctors tell me that multiple sclerosis was not off the table.

The lupus diagnosis came in May 2015 when I started seeing the doctor that was fired. Despite years of negative ANA tests, I had a positive SSA/Ro test. Based on that test, I was diagnosed with lupus. Don’t get me wrong – lupus is a horrible disease. But it explained all of the “extra” symptoms that didn’t fit with fibromyalgia, such as the sun sensitivity, the rash on my face, the random low-grade fevers that lingered for weeks. After going through the stages of grief, I came to terms with lupus because it made sense.

I saw my newest doctor this Monday, and of course he wanted to start over. He actually said, “Let’s not call it lupus just yet,” and was probably confused when I explained that while I was perfectly happy to have several hundred dollars worth of lab tests to support his desire to get his own baseline on my condition, he would see negative results except possibly for the SSA/Ro. We also changed my medications. I return to see him in eight weeks so he can assess the effects of the medication and discuss my lab results. It should be a lively conversation.

My advice to handle changing doctors? Be open, but don’t stop advocating for yourself and your treatment. And remember, even though it sometimes seems like it, we are not our diagnoses.

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Thinkstock photo via monkeybusinessimages.

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