the silver lining of dating with Lyme disease
Before I hit “send,” I hesitated. Did I really want him to know?
In a couple of hours, I was scheduled to go on a date with a cute guy I matched with on Hinge, but I was about to tell him I wasn’t going to make it. For a moment, it crossed my mind to attribute my last-minute flakiness to something vague, but I lacked the mental capacity to formulate an excuse that was both witty and thoughtful enough to make him willing to give me a second chance. Instead, I drafted a vulnerable response that risked the possibility he might immediately write me off and move on to his next potential Hinge date. I told him what I usually avoid discussing until I know someone better - I have chronic Lyme disease and I was experiencing a flare of undeniable symptoms from it.
It had been almost two years since I’d ventured into the casual dating scene. Since then, my life had changed drastically. Gone were the days of work hard, play hard. Instead, I’d gone through an exhausting hell revolving around doctor appointments to find out what was wrong with me.
For almost a decade, I’d experienced bizarre, intermittent cardiac and neurological issues, but my health had taken a recent, considerable decline causing me to again enter the revolving door of inconclusive lab reports and puzzled, yet sympathetic, doctors. Each diagnosis seemed like a shot in the dark, at best.
By luck, I eventually met with a doctor of osteopathy who thought my array of symptoms indicated I had post-treatment Lyme disease syndrome (PTLDS), more commonly known as chronic Lyme disease. My blood work confirmed her speculations — I was officially diagnosed with chronic Lyme disease, a multi-systemic disease caused by borelia burgdorferi, a spiral shaped bacteria, most commonly found in the saliva of infected black-legged ticks.
At first, I viewed it as yet another diagnosis to add to my growing list of health complications. I didn’t have time to deal with this "chronic Lyme disease” diagnosis — I had other, more pressing health issues to manage like my debilitating fatigue, insomnia, seizures, night sweats, and ongoing syncope episodes.
What followed were six hellish months of denial.
Eventually, I began to realize that this bacterial infection known as “the great imitator” had likely been the primary instigator of my past ailments, causing multi-systemic damage to my body for years. Treating it would require my undivided attention. I took an indefinite leave of absence from my consulting job, closed the dating apps, and moved back in with my parents.
I had no qualms about putting my professional ambitions and dating life on hold to focus entirely on healing. Despite having previously experienced phases of chronic illness, I still adhered to the belief that illness was temporary: a waiting room of prescription medications, bed rest, and reduced stress that would lead to a full recovery. I saw this “sick” version of myself as a transitional phase, each day bringing me closer to the old work hard, play hard lifestyle I once knew.
In hindsight, my assumption I would be fully recovered by various self-imposed deadlines illustrated my inability to accept this “sometimes sick, sometimes well” version of myself was here to stay. I was desperate to return to the “old” me I had been proud to present to the world. I didn’t want to be the employee who needs extended time off or the girlfriend who’s too tired to go out for dinner.
Yet given the snail-like pace of my recovery, it remains to be seen how much longer I’ll be sick. One year? Two years? With great difficulty, I’ve had to consider that despite periods of remission, I may never truly get much better.
As I write this, there are still weeks when I don’t have the energy to get out of bed, or even scroll on my iPhone, but after a year and a half of treatment, there are finally days when I do have the energy to shower or to leave my apartment for a few hours. While I’m not entirely well, I’m brave enough to accept this disease may come with long-term repercussions, and finally confident enough to no longer postpone dating until I’m “completely well.”
On the couple of dates I’d been on since being diagnosed with chronic Lyme disease, I debated whether to share that I’ve been seriously ill for the past two-plus years and chronically ill for the past decade. Ironically, in almost every other aspect of my life - friends, colleagues, casual acquaintances, I am very open about my diagnosis. I’ve written extensively about Lyme disease and living with a chronic illness. I’m a vocal proponent for the Lyme disease community and patient advocacy. In other words, nearly everyone in my life who isn’t someone I’m dating knows what I’ve been through.
Still, I can't help but worry. When I finally tell the person I’m dating I have a chronic illness, it feels like I’m giving up my ability to control how they perceive me. I want to be seen as accomplished and adventurous, to feel attractive and desired. Admitting to someone chronic Lyme disease is the reason I’m on disability, require financial support from my parents, and sometimes struggle to walk from the bedroom to the bathroom, is not a topic I want to discuss on a first, or even a third, date.
Which brings me back to the Hinge date. Our date had been scheduled a week in advance, but on that Friday afternoon, I was struck with a flare of symptoms that made it impossible to get out of bed, let alone put on makeup and a charming smile. Two hours before our date, I pressed “send” and disclosed my symptoms from chronic Lyme disease was the reason I wouldn’t be able to meet him. He graciously replied he was sorry to hear I wasn’t feeling well and would be happy to reschedule, and miraculously, we did.
So there we were on our rescheduled first date. Because I had preemptively disclosed a vulnerable aspect of my life, we quickly bypassed the superficial, “casual,” conversations typical of first dates. I found myself admitting to him how hard the past two years had been, but also sharing how my diagnosis had tested my resiliency and made me more compassionate and accepting. He admitted that he had had to Google “lyme disease” and was curious as to how I contracted the disease (unknown, but likely years ago in Wisconsin by an infected tick or mosquito).
It was an overwhelming relief to bypass my first date anxiety of whether to answer the question, “so what do you do?” with an extrapolation from my past or a present-day truthfulness. Tonight, I was on a date with a cute guy who already knew my current job was being a full-time patient, and yet he still wanted to get to know me. A truth that had required almost two years for me to accept, had taken him only a few days. Saying the exact thing I was worried he’d reject me for made me all the more human.