Wednesday, February 6, 2013

Chronic Illness Has Its Own Language

One of the most overwhelming things when I first got sick was all the medical lingo I had to puzzle through.

I consider myself fairly well educated, and during my days as an AP reporter, I had experience translating complex jargon (whether medical, scientific or government-ese) into English that the average newspaper reader could understand.

But when my brain was fuzzy from that onset of illness and the meds treating that illness, I could barely formulate questions much less understand the answers the doctors gave me. And they threw so much at me with tests and diagnoses I'd never heard of.

Thank goodness for the Internet. It started with LabTestsOnline, and from there to the Mayo Clinic website and various other sites online. I picked up the lingo to the point that my mom and my internist started telling me I should go to med school. :)

I didn't realize quite how much I had learned the language until my first visit with a neuro-muscular neurologist. When he asked me what I understood to be the reason I'd been referred to him, one of the reasons I told him was that my internist thought he might be able to figure out why my anti-ganglioside antibodies were abnormal and whether that was to blame for some of my neuropathy issues.

The fact that I even knew the phrase "anti-ganglioside antibodies" floored him. And when I explained my understanding of what they were and what they did, he asked me if I had a medical background because, he said, he'd never had a patient before who knew those details. (I'm still kind of proud of that!)

In these days of 10-minute doctor appointments, when even good doctors have so many patients to see every day that they can't keep up with the minutia of every patient's chronic illnesses, it's absolutely crucial for patients to develop some level of medical literacy because we patients have to be advocates for ourselves.

Despite the electronic medical records that should be linking all my specialists and my internist so they can all be in the loop, I frequently find that reports haven't been sent or that crucial information was left out. I'm constantly asked to provide test results and conclusions/recommendations from one doctor to another. Without my files of lab and other test results, I would have had to repeat tests so different doctors in different  health systems could see the results for themselves. (Having a fax machine helps, too!)

I can't think of a downside to educating myself to be able to understand what's going on with my body and with my various health conditions. And I would not continue to see a doctor who didn't appreciate my efforts to do so. (Early on, I dropped a doctor who told me to stay off the internet and that he would tell me anything I needed to know. Clearly, the man was still living in the 1950s.)

And educating myself helps me feel like I'm at least a little in control of my health. I might not be able to cure myself or even avert a flare, but at least I can understand what's going on with my health and ask educated questions of my various doctors.

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