Having lived with multiple sclerosis for 10 years before I was diagnosed with late stage Lyme disease, and dating with it all through my twenties, I’m no stranger to letting a guy in on serious health news. As a rule, I made it a 3rd date conversation: Long enough for them to get a sense of me as a whole person, but early enough that I’m not breaking hearts if they decide they’re not up for the challenge. “There’s something you should know about me,” I’d start. I’d tell them the facts with words like “incurable” and “degenerative”. I’d tell them how well I’ve done with MS, and what relapses look like for me. I’d tell them that I’ve been able to regain my health after each attack so far but that the future was unclear. Mostly dates didn’t mind at all. My guess is that most weren’t thinking far enough ahead to be concerned.
But Lyme is a little trickier to disclose. For one, it comes out earlier… usually on the first date when I explain why I’m not drinking, or why I’m ordering so carefully off the menu. When it comes up, I say “I have Lyme disease” matter of factly. They might nod and go “Oh, like from ticks?” I nod back. And unless they ask (which they never did), I don’t explain any further. Not yet. For the most part, these early reveals were a total non-issue. Each was met with mild surprise and interest, at best. So there, it’s out right? Not really. The simultaneous awareness of Lyme disease as a common bacterial infection and the complete unawareness of it as a serious chronic health condition makes it harder to explain what a big deal it really is. They think they know what “I have Lyme disease” means, but they have no idea. I’m still learning how to let this all out in an order that makes sense.
To be honest, I was way more afraid to tell would be gentlemen callers about Lyme than I ever was about MS. Multiple Sclerosis never took anything from my life. It gave me a few shitty weeks and months every now and then, yeah. But I was mostly healthy… at least between attacks. And I had a 100% normal existence. But Lyme… Lyme took my reliable body, my mind, my sense of safety, my favorite hobbies, my favorite foods, my very independence. I lost friends when I got sick with Lyme… a lot of them. I lost a long term partner. Lyme ruined the little world I lived in. I didn’t want it to ruin the one I was still hoping to have.
But low and behold, I did meet someone worth telling. Meep! I’d mentioned Lyme on our first date, and it had gone just like it did with the others. But as dates carried on, something about him was so promising and so wonderful, that I wanted him to know it all. I wanted to tell this fella… the one who’d given me such butterflies… how serious Lyme can really be. I wanted to explain that Lyme is complicated, and expensive, and probably a lifelong presence for me. I wanted to share my history of MS and Hashimoto’s and all these other conditions that I still feel like I should technically alert a prospective partner to. I wanted him to know about the controversy, and how weird my treatment plan will seem to some people. I wanted him to know about all the uncertainty and questions that I still have about what this will all look like in the end. I wanted him to know about this battle I’ve been fighting and the ways that the experience has changed me. Halfway through our 3rd date, it was time.
Turns out the surprise that evening was on me! I must’ve looked nervous as I geared up the conversation. Just a few words into it, he put his hand on mine. “Karla, I have something to tell you,” he gently interrupted, “I’ve read your blog.”
WHOA! There’s a reality I hadn’t considered! Welcome to dating in the modern day. Of COURSE he’d looked up my name just like I’d looked up his, and of COURSE he’d read this blog. I wasn’t sure what to say. After a few stutters, I smiled and I asked “Well ok, how scared are you?” and he said “I’m not.” He asked a couple of smart questions… ones about the relationship between Lyme and MS, about what food restrictions and careful health habits will need to look like in remission… we later talked about potential sexual transmission of the disease. But overall, he was largely unfazed. Shocker! He even beamed at me with hope and what looked a lot like admiration as I waxed emotional about my longing to be back under a barbell. He reassured me I’d get there, and we shared a high five. It all went so much better than I could’ve expected, really.
Because I am a lady with half a brain, I’m still seeing this delightful gentleman. And even though I am healthier at this stage than I have been at any point since I got sick, as dating goes on, the presence of Lyme in my life gets more obvious, and the extent of the impact more clear. We go out in the sun, and I have to keep covered up (thanks to side effects of doxycycline). When we eat out, I have to ask a lot of questions about the menu. I’m constantly taking pills. I have to make a lot of time for rest and detox. I sometimes say things like “I’m not quite healthy enough for that yet.” I share fears about upcoming treatment changes. I worry out loud. I have a sadness and fear in my answers when we each share our visions for parenthood (hello dating in your 30s).
I’ll admit, every time one of these things comes up for the first time, or ramps up in frequency or intensity, I get nervous. After all, being sick wasn’t the problem in my last relationship… it seemed to be the tedious, monotonous, sometimes limiting and isolating tasks of getting well that drove a wedge between my former partner and me. “Selfish” and “rigid” were new words used to describe me after the diligent work of living with Lyme disease came into my every day. It’s a burden… and I feel it. Shit, if I could walk healthfully away from all the effort, all the fear, all the caution, I happily would. I understand why partners do. I mean, they can.
But when this new fella lends me his sun hat and wears long sleeves in solidarity… when he pulls me by the hand into the shade while we wait for the light to change so we can cross the street and kisses me with a smile… when he encourages me to be brave enough to ask the waiter about the ingredients in my too-soft-to-be-corn taco shells… when he pours through my old blog posts with an open heart and interest in learning… when he asks questions about the pills I’m taking… when he asks me about how I herx… when he treats this like just another normal part of life… when he’s proud and unashamed to have me next to him just exactly as I am… I feel reassured on a deep level.
This is my first time embarking on a new relationship with Lyme in my life, and with it, I find I have an opportunity to develop a new relationship with Lyme itself. The ease and comfort this experience has presented me so far has allowed me to think a little less about the fear around rejection of my sometimes complicated life, and at least some about the benefits this whole journey has afforded me and, by extension, any potential partner.
Lyme is a bitch. I wish I never had to deal with it. And I’d give anything to remove the burden of my suffering from people who love me. But for all the challenge, it’s also given me a LOT. It’s edited my life so only the sweetest friends, most passionate pursuits and most rewarding past times remain in my days. It’s called upon me to explore my most inner depths, to re-train broken thought patterns and heal past traumas, to develop healthy coping mechanisms, solid boundaries and good mental health habits. It’s made me a better, more compassionate listener. It’s given me empathy in spades. It’s made me more grateful for every single gift in my life. It’s made me more likely to exclaim what is wonderful, and to say out loud what I love when I love it. It’s made me a bold pursuer of opportunity and adventure. It’s made me humble and emotionally open. It’s torn me to my rafters. And it’s forced me to rebuild. And what’s here after the wreckage… it’s better. I am a better woman. I am a better partner. Who knows, maybe one day I’ll be a better mom.
Lyme disease is a challenge I wish I didn’t have to deal with. And given the ugliness my limitations and dedication to self-care has been met with in the past, it may take me a while to lose the wince I’ve learned to give every time I let a someone I want to be with see Lyme’s presence in my life up close. But I’m learning to remind myself too, that those difficult elements… they’re part of why any would-be partner of mine has a woman like me on his arm. I can’t be separated from my struggle. And any man meant for a life entangled with mine won’t need me to.
Whatever happens, my hope is renewed that love can happen in life with Lyme. In some specific ways, it may even have Lyme to thank for a seriously upgraded experience.