What Having Lyme Disease Taught Me About Love

After several years without getting a diagnosis for my laundry list of painful, difficult-to-nail-down symptoms, hearing the words “Lyme disease” roll off of my doctor’s tongue felt oddly similar to my toes brushing the ground after I went skydiving above the Great Barrier Reef in Australia. I’d done it. I’d survived. I was going to be okay.

I sat down at my computer as soon as I got home and threw “Lyme disease symptoms” into Google. Almost every symptom fit perfectly.

Before my Lyme diagnosis, they'd told me that I might just have "incurable depression," and that my mind was the problem. They'd said that it could also be Hashimoto's disease, chronic fatigue syndrome, a relapse of the Epstein-Barr virus from the mono I'd had as a teenager, a hormone imbalance, fibromyalgia, pernicious anemia, nutritional deficiency, Attention Deficit Disorder, Post Traumatic Stress Disorder, epilepsy, Multiple Sclerosis, narcolepsy, obstructive sleep apnea, or a plethora of other scary possibilities.

While I did end up being diagnosed with a (curable) hormone imbalance, fibromyalgia and ADD, these still hadn't accounted for even a fraction of my symptoms. But Lyme did.

Inflammation of the joints? Check. Tremors in my extremities? Constantly. The chronic fatigue, the seizures, the short-term memory loss. The irregular heartbeat. The dizziness and rapidly declining eyesight. My sudden inability to concentrate. The ringing in my ears. The aching joints, the way my skin felt too sensitive to touch. The weight loss. The insomnia and increased anxiety. They were all there — but it didn’t take me long to find that they’d left one major repercussion of the disease off of the list: extreme difficulty with dating.

At the time , I’d been dating my then-boyfriend for almost two years. Unlike me, he wasn’t fazed by my diagnosis.

“You always think it’s something new and cling onto that,” he said. “I think you just need to take better care of yourself.”

The same words would come up again a few months later, when he dropped me off at the airport so that I could fly back to Syracuse, New York, where I was earning my master’s degree.

“Promise me you’ll take care of yourself?” he asked, before bending down to kiss me at the departures terminal.

“I’m trying,” I said.

By “take care” of yourself, he meant physically, but also risk-wise. He was very level-headed and reserved, where I was spontaneous. Perhaps he saw it as recklessness. I grew up camping and rafting. I’ve been SCUBA diving for the past decade. I’ve lived in other countries, slept in hostels with twenty other strangers, jumped out of planes on purpose, and ridden motorcycles. I have scars, but I have stories.

I was trying, though. But I’d lost so much weight that I’d accidentally carved deep pieces of my shin when trying to shave my legs. The circles under my eyes were dark and heavy. My morale was at an all-time low.

He couldn’t save me, and we both knew it; I didn’t know yet that in that moment we were saying goodbye. But it became clear a few nights later, over a phone call, that the mixture of long-distance hardships, my battle with Lyme disease, and other issues were going to spell out the end for us. He felt helpless to help me; I felt misunderstood and frustrated.

“I don’t think this relationship is worth pursuing anymore,” he said. I didn’t fight it. I agreed and hung up, unsure of whether this was actually the end, but determined to focus on my health and schoolwork.

Lyme disease and heartache, I found, have a lot in common. Both ebb and flow, some days barely crossing your mind, and others causing you to walk around like a raw nerve, totally exposed (if you can even get out of bed, that is). Some days, I caught myself checking out the good-looking guy that smiled at me in the hallway. Other days, I couldn’t imagine anyone else’s hands on my skin.

While the illness continued to wreak havoc inside of me, the makeup I wore left it a virtual secret to those who didn’t know me (shout out to my favorite blush, my contour palette, and a heavy dose of under eye concealer).

My amazing friends and sweet roommate rallied around me to make sure that I was okay, going out of their way to make me feel better and help me survive graduate school when I could barely move from my bed to the bathroom without aching. They continued to invite me to everything that they did, even when they knew that a “yes” meant “if I’m feeling okay,” and a “maybe” most likely meant “no.”

Though my answer when asked how I was doing was typically “tired,” I found that staying closed off in my room made me feel worse than pretending that I was okay.

Even though it fed into the whispers between some classmates that I was feigning Lyme disease for attention, or pretending to be sick to get extended deadlines or some other imaginary perks, I began to take advantage of my insomnia and took my friends up on their offers to go out and socialize some nights when I had the energy.

This is where I learned just how difficult dating with a chronic illness can be.

A good friend of mine joked that post-breakup, I fell in love with someone new every day. It wasn’t love for those men that I was feeling, but rather the freeing feeling of finally letting go of the love for my ex-boyfriend that I’d believed would last forever. I was lonely and the attention of an attractive stranger usually left me feeling better for a while.

But in the process of actually seeing new people, I quickly realized how much of a burden a chronic illness like Lyme disease could be to people that don’t already appreciate how great you are.

It sort of takes the “casual” out of casually seeing people when you have to take handfuls of pills at very specific times of day, such as at the bar, or at a restaurant on your first date. It also makes for an awkward text conversation when a presumptive guy you haven’t even been on a date with yet (let alone slept with) asks you (after too much time on Google, where discredited theories run amuck) whether Lyme disease is sexually transmitted. (The answer is no; there have been no credible scientific studies that suggest this).

My odd sleep schedule and routine of having to take about 30 different medications at all hours of the day and night made seeing and communicating with anyone regularly difficult. I couldn’t sleep in another person’s bed, because my insomnia lead to tossing and turning. I'd have to get up to take my 4 a.m. medications, and it would keep us both awake. My naps during the daytime meant hours where I was M.I.A. — something that was deemed sketchy by more than one guy who suggested that I was using my illness to avoid him.

Desperate for tips, I scoured the Internet for information about how to date with a chronic illness, but came up short. Most articles detailed how to date when you were in an actual relationship with someone. But I didn’t need to know how to keep my Lyme disease from making ~my man~ feel like he couldn’t tell me about his hard workday. I needed tips on how to have some semblance of a normal, casual, college dating life with it.

Some advice in forums and articles pointed toward my own attitude, saying that it was the culprit. If only I were happier about my chronic illness, maybe I could get a man to continue spending time with me instead of choosing another pretty, but healthy girl.

The thing is, I tried to be as casual about my illness as possible. No need to go on dinner dates, where my extremely restricted diet might become a topic of conversation. No complaining about how much my skin hurt and my bones ached when I woke up sober as a guy complained about a hangover. I didn’t want to burden anyone with it; so why did they make it into a burden? My attitude was purposefully cheery and upbeat, so what needed changing?

It took nine months of wondering, and trying to figure out when I'd know I was ready to move on, but I might have finally figured it out. I didn’t need to change anything about myself. I just needed to change the types of guys I was spending time with.

Since becoming a free agent with a chronic illness, I’ve come across many “types” of guys, but just like dating while physically well, there isn’t always a litmus test to know who they truly are or what intentions they have until you get to know them. Luckily, my illness sped this process up.

There was the “are you better yet?” guy, who didn’t seem to own a dictionary with the word “chronic” in it.

The “but you’re too pretty to be sick” guy, whose failed compliments turned into failed attempts at getting laid.

The “might as well be my mom” guy, who seemed to think I’d fallen ill with a seasonal cold or flu, and needed to be treated with soup, cold medicine (?), and by driving me to class so I didn't grow more sickly from being outside in the cold (at least he was nice).

There was the “medical student who should understand what chronic illness means” who still compared my being sick with how much harder his residency was.

And finally, there was the “friend zone” guy, who thought that getting involved with me would make him a bad person if we dated and it didn’t work out. He was my favorite, but potential incompatibility (if we couldn’t overcome it) wouldn’t have made him a bad person.

None of those types worked out, but I’m glad now, because it’s made me realize that my chronic illness was never a burden, but a blessing instead. It’s become a built-in barometer that I didn’t ask for, showing me who I should and shouldn’t spend my time, and more importantly, my energy with, since it's so limited. One day, if I stand at an altar holding the hand of a man vowing to love me in sickness and in health, I’ll know it’s true, because he will have already seen me in sickness, and loved me anyway.

Recently, I reconnected with a guy that might just fall into a new category, something like “the one who gets it.” He hasn’t dealt with me at my worst yet, so I wouldn’t blame him if he decides later on that my illness is much more than he signed up for. But so far, my barometer says he checks out.

He texts me on the morning of my weekly I.V. treatments to tell me that he hopes they make me feel better. He’s as adventurous and spontaneous as I have always been, and understands my need for adventure; but when I’m tired, he doesn’t see my energy levels as a deal breaker. Instead, he makes monotonous things exciting with me.

He doesn't think I'm lazy when I don't leave the bed for days, and surprises me with flowers, or by offering to pick up my dog from the vet when he knows I don't feel well enough. He reminds me to take my medicine when I forget, but he doesn’t interrupt me if I tell him a story for a second (or third) time, due to my short-term memory issues.

Recently, I asked him if he understood why some guys might have seen my chronic illness as a turnoff.

“I see how some guys could view this as a deal breaker, but they must be really shallow. This illness doesn’t define who you are, it makes you an even more unique person,” he said.

I made up excuses for all of the other “types” of guys, even before I got sick. After, it became easy to blame my own health since it was out of my control. If dating with Lyme disease has taught me anything, it’s that even when my health is out of my hands, my happiness is still dependent on me.

I wish it hadn’t taken a chronic illness to teach me what relationship behaviors are toxic, and what fights are worth fighting, but with any hope, one day I’ll be loved not in spite of my illness, but because of the strong, loyal, and independent woman it’s taught me to be.

If you or someone you love is battling Lyme ,Lyme and the City offers information on everything from Lyme testing, what to do if you're diagnosed, to the history of the disease.