Note from Lainie:

This post was originally printed in 2018 in a follow-up to a Q & A with it’s author, Rebecca, and focuses on the challenges and lessons of chronic illness dating.  If you are looking for more tips on how to date with an invisible disability like Charcot Marie tooth disorder this is the post for you!

Guest Post by Rebecca

Two years ago, I went through a breakup; the kind of breakup that makes your insides coil and introduces you to all kinds of anxiety in the form of panic attacks and sleepless nights. I was approaching my 31st birthday and I was single for the first time in eight years.

Endless questions flooded my brain: Would I ever get over this heartache? What would dating be like in a dating app society? What do you talk about on a first date with a stranger? Would men care about the wrinkles forming around my eyes, the sunspots appearing on my chest? And the most anxiety-inducing question of all: would they notice the signs of my neurological disorder? How different is chronic illness dating and finding love with a chronic illness than what it used to be?

What could go wrong when dating with an invisible illness?

The last time I was single I had muscular calves, walked confidently in heels, and didn’t think twice about going bowling. The last time I was single I was convinced my family’s disease, Charcot-Marie-Tooth, skipped me because my symptoms were nonexistent and I was already in my twenties. The last time I was single I didn’t care about dating.

Now in my thirties, I was still apprehensive about dating, but eventually, I succumbed to the pressure from friends who said things like:

“What’s the worst that could happen?”

LITERALLY MILLIONS OF HORRIBLE THINGS WOULD HAPPEN.

Or, “It’s fun, trust me!”

IT’S PROBABLY THE LEAST FUN THING I’VE EVER DONE AND I WAS ONCE STUCK AT SEA VOMITING INTO A BUCKET FOR 4 DAYS.

Adding to the list of things-that-suck-about-dating a genetic disease that makes you walk funny and it was almost too much for me to bear.

Shoe choices and other dating dilemmas

The first struggle I encountered, basic but consequential, was deciding what shoes to wear. I didn’t want to wear sneakers, but I also didn’t want to feel self-conscious as we stood waiting for a table or strutted across a restaurant. I often opted for jeans and booties with a low heel – dressy enough to show I’m putting forth some effort but comfortable enough not to diminish my confidence or call attention to my funny walk.

Like most things in life, it takes messing up a few times to get it right. I once wore boots I probably should have retired by now but stubbornly refused because they’re just so darn cute. They were about three inches high and went perfectly with my booty-flattering jeans. I don’t wear AFO’s but this post about the best shoes to wear with AFO leg braces can also apply when trying to avoid shoe disaster on a date.

I wasn’t the only one who was into the outfit; at the end of the date, the guy kissed me as we stood on the part of the curb that slopes down. I had to keep rocking back and forth to maintain my balance and leaned on his arm a few times. I’m sure he just assumed I was drunk from the wine. That or I was really impressed by his biceps (I wasn’t). Lesson learned: avoid high shoes when anticipating a curbside make out.

Then there was the time I decided to wear my Adidas Stan Smith sneakers on a second date to an art gallery. The soles of these shoes are heavy, exaggerating the lifting motion of each step for someone with CMT, but they are extremely easy to balance in when standing still. Plus, they completed my downtown Arts District look. I figured the need to balance outweighed the need to walk smoothly, assuming we’d only be walking a few steps at a time at the gallery.

Nope! The evening’s doomed shoe choice would lead to my next great dating challenge – the disease discussion.

We ended up walking from gallery to brewery, from brewery to restaurant, and restaurant to car. En route to venue #2, he observed my flamingo-esque walk and asked if my foot was okay. Why did I try to be hip with the Stan Smiths?

How do I tell him about my invisible disability?

I saw no way out of this conversation without lying, and so I mustered up the courage to face my first CMT chat with a potential suitor since my ex. If it goes poorly, I’ll chock it up to an experiment on how soon is too soon to discuss CMT on a date?

It was much harder for me to say the words than it was for him to hear them. He said it was “cute” the way I leaned back uncomfortably as I answered his questions about how it affects my feet and hands, the nature of the progression, and how it’s materialized in my mom and my aunt.

After what felt like an eternity (real time, 20 minutes) I realized his questions stemmed from curiosity, not intimidation. He didn’t look at me differently after that and continued to ask me out. Lesson learned: a guy can have all of the facts and be aware of all the uncertainties that come with CMT and like you anyway.

My disease isn’t a deal-breaker

What I’m also learning about men thanks to dating (which I still hate, but not because of CMT) and the advice from inspiring women, like Lainie and my mother, is that there will be guys who won’t view CMT as a hindrance. The fact that I have this enigmatic disease won’t determine whether those men like me or not. The guy I’ll eventually want to go on a 4th, 5th, or 10th date with will only care about what I have to say, what makes me laugh, where I want to travel next.

What I’m discovering about myself is that it simply doesn’t matter what other people think of you. It sounds like something written on a poster that clung to the wall of my 5th-grade classroom, but twenty years later I think I finally comprehend this concept. When I’m able to apply this to my daily life – whether it’s walking past a group of hot guys, tripping at Starbucks, or holding my wine glass by the bowl and not the stem – my confidence soars.

It’s up to me to view this as something that makes me unique, to embrace the challenges it presents, and to focus on what I do have the ability to control. I think ‘normal’ is going out of style anyways. At least I saw that on a graphic tee somewhere in the Arts District.