Not Exactly the Sexiest of Dinner Topics
Perhaps one of the most impactful experiences in my chronic journey involved a boy. Ew. That sounds so bad. But — let me explain. In 2022, I was coming to grips with the upsetting realities of muscular dystrophy. The atrophy was progressing and starting to play a bigger role in my life. Dog walks shortened, fatigue heightened, and pain became a constant companion. I found myself mentally spiraling, and estimating how many more years I had left to even walk. Seeing wheelchairs would send me into a fit of tears. I was going out every night, dating, seeing friends, visiting family — doing whatever I could to not be alone with my thoughts. I was toxically extroverted. And being in the bad place I was in, when there was a boy I liked, he would be held on the highest of pedestals. Because he was not only someone to date, but the ultimate distraction.
So, this boy, let’s call him Collin, he was my new favorite thing! We’d met organically, gone on a few dates, and things were going super well. It was late October, and the weather was chilly. Collin had just come over with groceries and cooked me the most lovely and healthy meal. The fireplace was going, the dog was asleep in his bed, and Collin was thumbing through my Amazon Prime account to find the scary movie he’d picked for us to watch. He presses play… And the main character is in a f*cking wheelchair. My mind raced, and my throat tightened—a level 10 in exposure therapy to my wheelchair sensitivity. Collin didn’t really know about my muscular dystrophy yet. No one teaches you the etiquette of when you’re supposed to reveal to your date that you have a muscle-wasting disease. Not exactly the sexiest of dinner topics. I sat through that entire movie, internalizing and facing every fear I had spent that year actively avoiding. When the credits rolled, he noticed my demeanor had shifted. And then — I explained it to him.
It’s a confusing disease, so I only gave him the nuts and bolts, but I was honest. I wanted to be open, and I wanted him to support me in that moment. You may think that this was too soon to drop the bomb on him. But I’m the one who lives with the bomb every day. Looking back, I don’t regret this decision in the slightest. I would tell him again and again and again. I would shout it from every rooftop. It was the defining moment I stopped looking for a distraction and started looking for a partner.
Collin dumped me over drinks the next week because he “couldn’t date someone who was going to be disabled”. Yikes. He later revealed to me over a set of drunken Snapchats that it was just a cop-out for his fear of commitment, but it didn’t matter. It set two new personal philosophies in motion:
1. I was done filtering myself to make a guy like me. Using someone’s chronic illness as a scapegoat is probably one of the shittiest things you can do to a person. If someone does this to you, run. But don’t ever let it stop you from sharing your truth.
2. I would no longer survive off the distraction others could bring me. I needed to be able to watch movies with wheelchairs. I needed to pull myself out of the hole. No one could do that for me. Not my mom, not my best friend, and certainly not Collin. It was high time to face the music and move forward, and whoever the universe had in store for me would come.
And that’s exactly what happened.
A few months later I met my dream human and the strongest love I have ever encountered. I told him about my muscular dystrophy one week into dating, and he responded with nothing but assurance and kindness. He was quick to research the top institutions developing cures as we speak. He listened to every story and asked thoughtful questions. I loved him in that moment, and I love him more each day. He’ll get down and tie my shoes before I even realize they’re untied, so I never have to bend down. He carries all of my things when we travel, and will take the middle seat on the plane every time. He drives every road trip because he knows that driving hurts my hips. He calculates walking distances before we go places to make sure I can handle it, and will run up and down the stairs to get me anything I need at any time. He always wants me to have the comfiest part of the couch, and will bring me Chipotle during my flare-ups. He thinks of my well-being even more than I do.
Chronic friends, do not fear they will not love you back when you tell them. If they are worth any time at all, they will love you just as well as you love yourself. If not more.
Be well,
Amanda
