Okay, so Valentine’s Day has come and gone, and I’ve been thinking about love—and my experiences navigating my path to finding it. To say my relationship with love has been complicated would be an understatement, especially when I throw in the curveball of being diagnosed with Friedreich’s ataxia at 17. Like many living with Friedreich’s ataxia, I discovered I might not live long.
Letting My Diagnosis Take the Lead
Being told you’re going to die young wreaks havoc on your psyche, especially when it comes to romance. For me, I wanted to experience love. Not just any love, but Disney love– complete with a Prince charming who would whisk me away into a blissful happily ever after. I envisioned myself as Cinderella, waiting for someone to rescue me from the chaos of my life, and, most importantly, before I became a wheelchair user. Who would love me then? Who would be attracted to me?
In addition, I was very distrustful when it came to men. I expected them to cheat. I was filled with insecurities, and constantly questioning where I stood with these guys. Also, I was always desperate to be with them and made sure they knew I was watching.
In my stubborn quest for love, I sometimes ended up in not-so-great situations. I dated people who were already in relationships, taking on the role of “the other woman” more than I’d care to admit. Honestly, I didn’t feel that bad about it at the time. The fear of dying young without experiencing love pushed me into places I probably shouldn’t have gone.
But something changed during my last stint as the “other woman.” Instead of panicking, I found this unexpected calm. I realized that my role in this person’s life was minimal and would only happen when he had time to spare. And guess what? Instead of feeling anxious or devalued, I discovered a sense of security. It was empowering to know I didn’t need someone else to define my worth. And in some weird way, I began to trust that I was enough. I actually started to love myself more. Is that weird?
Now, this is, by no means, an encouragement to be in a similar relationship. I am just telling you how it worked for me into my 20s and living with Friedreich’s Ataxia.
In my 30s, as a recently single woman and a wheelchair user, I tried online dating. But it never seemed to work. Still believing I was unattractive, I didn’t want to show myself in my wheelchair. Then even the few people I had some success with immediately ghosted me or said they weren’t interested when I told them. So that backfired. But I was also hesitant to show myself in my wheelchair on my profile. I had heard of devotees (people who are attracted to wheelchair users). I didn’t want to be seen as an object instead of a human being. The possibility of connecting with someone who wanted me, based on my mobility device, freaked me out. I could handle being objectified because I was a woman, but being objectified for using a wheelchair seemed more sinister; I was sort of lost.
Living with Friedreich’s Ataxia Doesn’t Mean Living Without Love
Now, I am in a loving and trusting relationship. It began with someone I had known for years, and never really expected anything more than friendship from. It’s been 14 years! While society often romanticizes love as a grand, all-consuming experience, my understanding of love has matured into something much more nuanced. I’ve learned that true love isn’t about being swept off your feet. It’s about building a partnership where both individuals feel valued and respected. It’s about finding someone who appreciates me for who I am—wheelchair and all—and not just for the person I could be without my condition.
As I look forward to what lies ahead, I encourage everyone to embrace their own path to love. Don’t be afraid of the bumps along the way; they all contribute to your story. Be patient with yourself and remember that the right kind of love can be found, even in the most unexpected places. So, here’s to the messy, beautiful, and complex journey of love—for those living with Friedreich’s Ataxia or not. May we all continue to discover it in our own unique ways!
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