I’ve had Lyme disease for most of my life. Although I had tick bites throughout childhood and adolescence, I wasn’t tested for Lyme disease because my rashes never looked like a traditional “bullseye.” There were tons of them all over my legs. I figured they were from spider bites. They embarrassed me; I never wanted to wear shorts because they were huge and hideous. No one in my family suspected Lyme disease. Over time, my health declined dramatically.
My case is not unique. I ask you to keep this in mind as you read my story.
I’m a white person with a substantial amount of privilege on top of what my skin affords me. Still, I didn’t have the “right” skin for erythema migrans rash detection. I wasn’t diagnosed at the most critical time (early) because my doctors failed to recognize my rashes.
Missed diagnosis is a common theme in our community. Still, I ask anyone who may not have experienced a skin-related diagnostic setback to imagine how much harder it is for people with darker skin tones (darker than mine, certainly) to get diagnosed and treated. The numbers are staggering. Consider, too, how damaging the passage of time is for everyone whose diagnosis gets delayed and how much longer it takes for people with even slightly less privilege to get the help they need.
As it turns out, I possess two qualities that work against the conventional visual diagnostic process. Firstly, I have Ehlers-Danlos Syndrome—a genetic condition that affects connective tissue throughout the body. EDS can cause atypical skin reactions, which was partly why my tick bites didn’t look “normal.” Secondly, I have just a little more melanin in my complexion than the very light-skinned people whose EM rash photos are typically featured in medical textbooks.
For a long time, the multitudes of doctors that I saw offered only partial answers. I was diagnosed with everything under the sun except what was actually causing my symptoms. No one suggested that my skin was displaying signs of systemic infection. When they were visible, my rashes were called allergic reactions, at best, and deemed standalone conditions (even burned away with acid—seriously) at worst. I was prescribed countless ineffective and often damaging medications and told (more than once) that my illness was “all in my head,” that my pain was “normal for a girl,” and asked if I was “just depressed” because I “didn’t look sick” and that I was “ahead of medicine.”
Let’s shed light on some common misconceptions. Not everyone who has Lyme disease gets a rash. Those who do get one might not notice or even be able to see it. If they do, they might not recognize it as a tick bite because the rash doesn’t always take the shape of a bullseye. Often, when a rash is present, many people, including doctors, aren’t aware that what they’re looking at is a definitive sign of Lyme disease.
I was finally diagnosed as an adult. By then, my illness had become chronic, multi-systemic, neurological, and debilitating. I’d been fortunate to find a perceptive Lyme-literate doctor who recognized my symptoms as classic to Lyme and its co-infections.
Like many of my peers, after years of being homebound and often bed-bound, unable to participate in most activities, take proper care of myself, or function, I researched my condition vigorously and dedicated myself to helping other Lyme patients. I began 2020 by joining the Generation Lyme team and regularly engaging with the large, inspiring, knowledgeable community of people who share the experience of feeling unseen and unrecognized in the fight for health. I learned (and continue to learn) a lot from them.
But my diagnosis story wasn’t over. I also started 2020 with a new tick bite I’d sustained in Central Park. It was hardly visible at first. I saw only a faint, small bullseye barely different in color from the rest of my leg. I thought I was seeing things and being paranoid. But then it grew, expanding rapidly and turning a dark purple. Looking at the rash, I had visceral flashbacks of my legs as a kid.
At the time, I was already under the care of a (seemingly) Lyme-literate medical doctor. I showed him the rash on my calf. He asked, “What is that? Why is it that color?” I didn’t get diagnosed with re-infection; my blood tests were negative. A year and a half later, my symptoms hadn’t subsided. Only then did my doctor reconsider Lyme and co-infections. I knew better. He knew better. But I unintentionally trusted the system I’d chosen. My doctor’s knowledge—which had been so helpful before—was incomplete.
I’m writing this to highlight multiple bias problems. First, Lyme disease is not a well-received subject, period. Our community knows this all too well. Second, Lyme disease is not well-understood by any community outside the research-obsessed. Even Lyme-literate doctors, who help so many patients, are missing crucial information about the complexities of Lyme symptoms, diagnosis, and treatment. Third, non-white people and women notoriously suffer dismissal and discrimination in medical spaces. Fourth, the various types of Lyme disease skin manifestations are so often missed during diagnosis. None of this is okay.
For all of our sakes, we need our doctors—even our LLMDs—to keep learning. If they can work to resolve these problems, they’ll be able to help exponentially more Lyme disease patients. And they’ll help chip away at broader systemic issues that leave so many people behind.
