This picture was greeted like a frame from golden age cinema, with Hollywood quotes and heart reacts. Occasionally, someone asked me “Since when did you turn into Stevie Nicks?” A half-joking question, since most of my friends knew I became Stevie Nicks the moment I bought the top hat. From the first glance, it’s easy to look at this picture and see it as something for the film industry — technically true because I took it in a series of selfies to cheer myself up after heartbreak. What no one knew was that something far more sinister hid underneath the pixels, the top hat and the lovelorn tears.
Lyme disease had begun its advancement across my body from the innermost ridges of my skull to the bottoms of my heels, destroying everything it could touch. Simple errands ended with store employees bringing me bottled water as I fell to my knees, crying because any sort of movement felt like torture. Any sort of meal involving pasta was met with uncertainty because I never knew if I would be OK or if I would be sick within 10 minutes. My temperature climbed anywhere from 99 to 101, and was accompanied by headaches that felt like my brain pushing against my skull. All the while, I was falsely told by urgent care that my illness was the result of a sexually transmitted disease because I had “a really bad immune system.”
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I may look like a glamour queen in this picture, but the day I took it was the first of many days where I wondered if I would die before I turned 30. Worse yet, I wondered if I was being punished simply for a one-night stand at a music festival. It would be another year before an infectious disease doctor re-tested me, only for the results to be negative and revealing that urgent care clinics mix up test results frequently. Following that test, it would be another six months before I was diagnosed with another illness that, miraculously, required the same antibiotics as Lyme disease. One more half-year would finally get the recognition of another doctor who looked at my response to the antibiotics and gave the diagnosis.
Three years since this photograph was taken, most traces of Lyme disease have gone away. Sometimes I’ll have twinges in my limbs, reminding me of the neuralgia from my lowest points. I get tired far more easily than I did before Lyme disease, and need long naps to keep myself together. My short term memory has been significantly dulled, with language studies giving the greatest exercise to restrengthen my mind. None of these lingering phenomena can be seen in a photograph, alongside any part of Lyme disease that does not involve a hospital. Hiding in smiles, shadows and self-made photographs, Lyme disease can “walk into all bodies in all towns in America.”
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It just so happened that it walked into mine, and posed under my skin for a Hollywood selfie shoot.
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Read more stories like this on The Mighty:
What Happened When I Told My Date About My Lyme Disease
Why Turning 30 Was the Right Time to Share My Lyme Disease Story
The Shocking (and Positive) Side Effect of My Lyme Disease Treatment
