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Updated Oct 14, 2024Dating With Chronic Illness: A Love Story
From a drive-thru meet cute to planning our own wedding.
They always say you find someone when you least expect it, and that was definitely the case when I met my now-fiancé. Navigating love in your 20s can be difficult enough, but dating with chronic illness adds its own separate issues into the equation. This is the story of how I, a freelance writer at The Knot, made a chance decision to go to Starbucks one winter day and ended up on a now 12-year journey with the love of my life.
The Beginning of the Story
Coffee, with a shot of first love. At least, that's what ended up being on the menu that day when I drove through Starbucks, looking for a hot drink on a blustery January day.
The short of it is a friend and I went to the drive-thru on a whim, and I ended up with a crush. The long of it: A charismatic voice on the other end had us both laughing, turning to the other as we drove to the window and saying, "This is the most fun Starbucks experience we've ever had!" Until I locked eyes with the barista and was a total goner. Sure, the striking blue eyes and gap-toothed smile sealed the deal, but I knew his voice and personality first. The one that would continue to make my heart leap with his easygoing manner and enviable charm.
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What's funny about this experience is that I'm not a coffee drinker. I have several health conditions that make caffeine a strong no, but fate duly intervened on this one and forced my hand into buying at least a cake pop.
Dating Life as a Neurodivergent Spoonie
My dating experience before this serendipitous moment with Stephen was…well, pitiful. To be honest. Growing up neurodivergent (without actually knowing there was a word for these feelings and that I wasn't just some alien dropped onto earth expected to learn it all as she went) and chronically ill, I forever felt on the outs of what seemed so easy for everyone else. Like life handed everyone else a script, and I had to "yes and" my way through every social situation imaginable. I even bought a book with my allowance at the Scholastic Book Fair in fifth grade titled "A Smart Girl's Guide to Boys," and it's pretty safe to say that manual did very little for me.
By the time I was nineteen, I had just gotten my heart broken over a situationship, and I was also newly diagnosed with my first chronic illness, a form of Dysautonomia called postural orthostatic tachycardia syndrome (or POTS, since it's such a mouthful). I'd been going to the doctors since my first onset of symptoms at just fourteen, fainting after a long, and my first ever, flight. Over the years, I'd faint everywhere, from English class to Delia's, not knowing why or what caused it so that I could find some way to safely prevent it. Doctors suggested it was anxiety because accompanying the fainting were heart palpitations, dizziness, nausea and difficulty breathing.
I was only twenty on that fateful day I met Stephen, but I was jaded from so much already that despite the pull of this boy, I wanted to hold myself back. From the feelings, from the inevitable hurt. From the guy holding all the cards because I'm just the type of girl who can't help but fall head over heels and have it written all over my face.
Except, this guy was different. After a few visits where I could barely get out a few words, we exchanged names once a mutual friend accompanied me to Starbucks. Another twist of fate, that pesky thing. He sent me a DM on Twitter with a cheesy pickup line, and after a few weeks of exchanging texts and phone calls, he said forthrightly that he wanted to take me on a date.
The First Date and Diagnosis Reveal
So Stephen planned a night for us, a Wednesday on that mutual friend's birthday, where we dropped off cupcakes for him, and Stephen whisked me away downtown. We rode the trolley to the Madison hotel, now the Hu, and sat on its rooftop as we watched Back to the Future on his laptop and drank cream sodas, one of my favorite movies he'd never seen and my favorite non-caffeinated drink.
The level of detail wasn't the only refreshing thing about this date. For all the other "dates" I went on before this because guys never called it what it was, this one was just as nervous as I was. Which never happened to me. To me? The girl who turned shy around anyone she liked? See, he was the opposite. Thanks to my nerves, I could barely squeak a word out or keep eye contact, but he was a nervous talker, filling all the silences. And it worked.
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He didn't know about my health quite yet. He was patient and understanding from what I could gather when I dodged questions about whether I went to college (not yet) or if I worked (too disabled). I wanted to wait for him to know me as a person, not as a YA novel heroine, where the chronic illness overtakes the personality to a fictional degree. I was just a 20-year-old trying to find her purpose in the world and go on a date with the cute guy she met a month prior.
But when all the other guys left without this diagnosis being in the equation, I wondered, why would he stay? I put my trust in him anyway and told him in an hours-long phone call a few weeks later. I didn't want someone who would treat me like a damsel in distress who needed rescue. I just wanted to be someone's equal, someone's partner. And that's exactly what he gave me.
A Decade of Dating, More Diagnoses and Memories
Being disabled and chronically ill can present challenges in a relationship, but only if the other presents it as a burden. But Stephen has never made me feel as though any part of me or my health is something to be ashamed of, regardless of my own internalized ableism at times. He's pushed me in wheelchairs around bumpy cities and Comic Cons, stayed overnight with me in a hospital hours after a concert, held my hand during blood draws (which I still hate all these years later) and been the first person I ask for after I wake up from anesthesia. Which is how you know it's true love.
In the past decade, we've been through the gamut of life changes. I was diagnosed with even more chronic illnesses, had multiple procedures and surgeries, spent time in the ER and even, yes, fainted once more on a long flight. The one that ended up being a memorable trip where he popped the question. He asked me to marry him in Camden, the same borough in London where his own parents got married, before we went to see a West End play on our last night in England. (Well, actually, he forgot to ever say the words, "Will you marry me?" because I shouted yes emphatically as soon as he opened the ring box.)
I remember this same friend who went through the drive-thru with me, daydreaming about my future wedding with this guy. And I said, "Oh, we're not gonna get married." Not because I didn't like him or anything, but because I was a realist a few weeks into dating someone at just 20 years old. Of course, I'd be eating my words eventually, but these are easier to digest than most musings of a 20-something.
And it wasn't until my college graduation party that Stephen and I realized we actually met before our drive-thru meet-cute. My sister and her best friend were reminiscing about the time they took me to my first concert, the All-American Rejects in Memphis, when I was just 15. We waited in line all day to ensure we'd get front row center, and this group of boys we'd never met joined us in line, having just bought a samurai sword at a nearby flea market. Thus, we dubbed them the ninjas. As we told this story, Stephen chimed in, "That was me and my two friends." To think, I'd stood in line beside this same boy many years before, but timing is apparently everything. We wouldn't really notice each other until we were 20, and now he's the first face I search for in any crowd.
Working in the Wedding Industry as a Couple
In separate years, he and I both became employed with The Knot—I freelance write while he's a senior CX rep, helping others on their marriage journeys even as we plan our own. It's easy to plan your dream wedding when you work for The Knot, in my opinion, because we're constantly exposed to beautiful ceremonies and unique traditions that speak to who we are as a couple. Do we incorporate our love for Marvel into our cake? What about a Celtic handfasting ceremony to honor his Irish roots? One thing we know for certain is we want something low-key and very "us."
Plus, I've had a ton of practice in planning any wedding event, with my experience in writing about bachelorette party ideas, different types of wedding traditions and even now writing about other people's love stories with Real Weddings. Being immersed in this wedding inspiration each day has been a lot of fun for both of us, and I know that whatever our wedding day looks like, it's something we'll have created together. And planning a wedding while chronically ill has its own set of challenges, but the way we've navigated life for the past 12 years together has me confident that we'll make the day work just for us. After all, we've been navigating our relationship around "in sickness and in health" for so long that everything else on our wedding day will just be sprinkles.
