Dating and Disabled: The Lesser Known Hardships of Disability
Recently, I met a guy who checked almost every single box on my list.
And even though it felt right, I knew I wasn’t ready.
We had lots in common, but there were two things holding me back: fear and my disabilities.
You don’t really get too deep with someone in the first few conversations or texts. It’s usually about hobbies, what you do for work and how many siblings you have.
And when I answer those questions, I feel like a fraud.
It’s so uncomfortable talking about everything but the elephant in the room: my disabilities. But hey, you don’t want to scare anyone off too early. Being disabled is probably too deep to mention right off the bat.
Almost every time a guy will ask if I did any sports growing up. I want to text back, “Oh I used to play volleyball, but I can’t anymore because I found out I have a life-long connective tissue disorder.”
Most of the time, I just say I played volleyball without mentioning my disability. Next, they’ll ask me if I’m still active and play. I don’t usually know how to respond to that.
I have so many limitations when it comes to everyday life. Here’s a list of a few “active” things I’m supposed to avoid: running, contact sports, intense hiking/rock climbing, skating, squatting, jumping, heavy lifting and much more.
The only activity I can really do is walk, and trust me, I do a lot of it. Pilates is also great for my joints which is a plus.
What’s really annoying is that, while walking is good for me, I could injure myself anyway. I truly am not safe in any I step I take.
Funny enough, I can’t even really write with a pencil because my thumb will dislocate.
If it’s too hot outside and I don’t have my 50-ounce water jug, I’m at risk for passing out. When I’m in the sun, my skin gets a gnarly sunburn after being out for only an hour. My legs turn purple in the shower if it’s too hot because my circulation doesn’t work.
There are so many things to watch out for, and it’s really hard to explain that to someone who’s interested in me.
I can’t even tell someone what I do for work right now with my current situation. My response would be, “I’m a journalist, but I’m currently taking some time off because something else popped up.”
That’s a super ominous text to get from an easy question. Next, they’ll usually ask me what I’m doing instead. You know what I say? “Oh, just a few doctor appointments.” Still ominous, and each light-hearted question continues to lead back to the elephant in the room.
Even when you find someone who accepts that you’re disabled, they still don’t truly understand it.
Some days, I really can’t leave my house for long periods of time because I’ll be in a flare up. If I say that, guys will usually respond with “Well, we can do something when you get back to normal soon.”
Haha, “normal.”
This is my normal. I will always have a new medical problem pop up. Whether it’s a gnarly headache, dislocation or autoimmune dysfunction, it’ll happen.
Even when I’m at my best, I still experience pain. I’ll have partial dislocations, called subluxations, almost every time I walk. I feel unstable 24/7. No matter how much I do my exercises, it won’t change my genetics.
My body will always be flawed, and I’ve accepted that.
The thing with Ehlers-Danlos is that every person’s symptoms vary in severity. For some, they’re able to live normal lives with no problem. For others, it’s hard to handle day-to-day life (let alone dating).
I know I fall on the more severe side of the spectrum, with a few glimpses of normalcy allowing me to handle some tasks.
I had to come back home every single break from college. I wasn’t able to go on fun vacations with friends because I had a date with my many doctors. There’s never a break from being poked and prodded.
I may be “stable” right now, but I’m having muscle spasms in my fingers and legs while I write this sentence. This is normal for me; every time I’m in bed this happens.
When I find a swollen lymph node, my first reaction isn’t that it’s just a cold. Now, it has to be “Uh oh, my cancer might be back.” I’m sad this is my normal at 23, but I’m proud to represent the disability community through my life.
So back to the whole point of this monologue: dating in a disabled body isn’t easy. I do still have the normal fears, but I also wonder if I’ll be “too much.” I know my life is overwhelming, and some people just can’t handle the difficulties that come with it.
I can’t even tell you how many times I’ve apologized for explaining my disabilities. “I know it’s a lot; I’m sorry if it’s a little overwhelming for you,” I’ll say. They’ll tell me to stop apologizing, and that they aren’t overwhelmed.
I don’t believe them most of the time because this is my entire identity. It’s not just one conversation, it’s going to take months (if not years) for an outsider to truly understand.
If you don’t have a family member with chronic illness, the thought of someone always being in pain sounds unfathomable. I’m here to tell you that those lives exist, and I’m one of them.
This is a part of disability life no one talks about, and I’m ready to sprinkle some perspective into the pot.
Life is hard and so are relationships. But when you throw chronic disabilities in the pot, it makes it impossible. This problem isn’t talked about enough, and I’m finally at a place to share some experiences on this topic.
So stay tuned, this won’t be the only post about dating and disability.
Sincerely, Abbey