Telling people I have Lyme disease can be tough. I’m never sure what level of Lyme literacy my disclosure will be up against. Thanks to improved awareness efforts, more and more people have at least heard of the disease, though they might not understand its complexity. But telling people I have other tick-borne co-infections is almost always met with a look of, “You have what?”
Before tick-borne illness became my way of life, I had never heard of babesia, ehrlichia or bartonella, either. These parasitic infections are difficult to pronounce, let alone spell or comprehend. It’s easy to brush off what we don’t understand as not important, but sweeping these illnesses under the carpet is an egregious error that we cannot afford to make.
A single tick bite can deliver a number of co-infections, the most common being the aforementioned three. Unfortunately, the presence of these coinfections can complicate treatment immensely. Babesia, for instance, which is related to malaria, requires completely different drugs than Lyme. When a Lyme patient doesn’t respond to treatment, it may be due to undiagnosed and untreated co-infections.
It’s time to include co-infections in our Lyme awareness efforts. This is a tall order for words that don’t exactly roll off the tongue. My writing professor, fed up with trying to sound out babesia, finally exclaimed, “I can’t pronounce it. Let’s just call it babelicious.”
The class laughed. But more importantly, they began to understand. With a name they could latch on to, my classmates suddenly wanted to know more about the parasite that rendered this former athlete unable to ski or run. I explained to them that the lack of proper oxygenation to my cells was akin to what marathon runners call “hitting the wall.” That phrase describes the exhaustion caused by the depletion of glycogen in the muscles. The effect is the same for a patient with compromised red blood cells who attempts to ride a bike.
When I was first being treated for Lyme—and only Lyme—I tried, despite my body’s protests, to do physical therapy. After thirty seconds on a stationary bike, I completely ran out of steam. Every muscle in my body ached. I felt dizzy and lightheaded, and wound up in bed for days recovering.
There was nothing sexy about the situation. But if a name like “babelicious” can help improve the sex appeal of the disease—i.e., to increase acknowledgment of and support for it, just as we see with more “sexy” maladies like breast cancer and heart disease—then more power to it.
Now friends know why I need to stop and rest when we go for walks, or why I take the elevator instead of the stairs. They don’t think I’m lazy, or that some weird infection they can’t pronounce is all in my head. They know my babelicious is acting up. Most importantly, they know to look for the symptoms I’ve described in their own vigilance, and they know to be tested for all tick-borne disease, not just Lyme, if they suspect infection.
If we hope to spread Lyme literacy, we must change our own language to include all tick-borne diseases. My professor’s got babesia covered, but how can we make ehrlichia and bartonella easier to pronounce and remember? How can we make “tick-borne disease literacy” less of a mouthful? I’m open to suggestions!
Jennifer Crystal is fighting the good fight against chronic tick-borne illness. She is grateful to be healthy enough to be working towards her Masters in Creative Writing at Emerson College, in Boston, where she is working on a memoir about her medical trajectory. Her website is jennifercrystal.com. Email her at firstname.lastname@example.org.