Chronically Isolated
“I keep forgetting to take these pills my doctor prescribed me. I’ve never had to take medicine daily before,” one of my friends said to me followed by a laugh.
I froze as a pit in my stomach grew. I had no idea how to respond. And one thing was for sure, I did not relate; I’ve been taking medicine daily since I was a teenager.
Why am I so different from people the same age as me? How do I respond to comments like this without sounding like I’m throwing myself a pity party? Why can’t I be like them?
I know this wasn’t meant to be a jab, but it’s comments like these that remind me I’ll never fully fit into the normal, young mold. I may look healthy from the outside, but inside, I’m broken, chipped and bruised.
The most prominent experience for a chronically ill person is physical and mental isolation. And there’s no way to escape this; it’ll always show up in some way throughout life.
There’s a disconnect, and no matter how hard you try, you can’t fully fit in today’s society. You’ll always know you’re different from everyone else in the room, no matter how well you hide your symptoms.
I tore my rotator cuff recently, and the first thing friends asked me was “Oh my gosh! What did you do?”
Want to know what I did? Slept too hard on my left side causing my muscles to slowly tear over time. That’s definitely not the answer anyone expects.
Able-bodied people hurt themselves by doing active things. Many may expect I either fell on my shoulder while doing a five-mile hike, or that I hurt it diving for a volleyball to make an amazing save.
And then when I do tell people the real reason of my injury, I usually get the response, “You are so unlucky! Why can’t life give you a break?”
Want to know why I “never get a break?” It’s because I’ve been given a body that’s inherently flawed, slowly withering away with every breath. I’ll always have problems because my connective tissue isn’t normal.
One thing about EDS many people don’t understand is that connective tissue is more than just your ligaments. Yes, dislocations were the reason I got diagnosed, but this tissue is found in every aspect of your body: skin, eyes, gums, cartilage, GI tract, nervous system, reproductive organs, etc.
“Your skin always looks so clear and young! What’s your secret? I’m dying to know,” someone will message me if I post a selfie on Snapchat.
If I responded truthfully, I’d have to say my skin looks so youthful because it doesn’t work correctly. I look so youthful because my skin doesn’t know how to tightly hold my body together.
But you want to know how I respond? I’ll say, “Haha, thank you! I’m not sure, I just wash my face every night before bed and moisturize!”
That may not be 100% truthful, but it’s better than saying my skin looks great because I’m disabled.
So many of my friends also tell me about their crazy college lives, talking to multiple boys and going out every weekend. I listen because, first of all, it’s entertaining and I need to live through someone, am I right?
But secondly, I listen because I’ve never fully experienced that aspect of college or young life. Anytime I went out to bars with friends, I’d be extremely fatigued by 11 p.m. I can’t dance because I don’t want to dislocate on the floor.
I can’t even drink much because of the medications I’m on. It was all-in-all an uncomfortable time.
After COVID, I couldn’t go at all because I was so scared I’d end up with the newest variant. I wouldn’t wish being immunocompromised on anyone in this day and age.
I can’t flirt with guys in these scenarios because it feels fake. It’s like I’m living in an alternative universe for a few hours, waiting to snap back into reality. Nothing about it feels safe or comfortable.
Every time I make a new friend, I always soft launch my disability to them.
In college, the friends I made in class would slowly earn my trust. Sometimes, they’d walk with me to my car, seeing me head straight for disability parking.
At that point, I usually see confusion on their face. It’s awkward, but most of them handled it beautifully. It’s just a weird experience because it’s as if I’m pulling off my disguise for the first time.
This really irked me when I was first diagnosed. I tried so hard to fit in, go out and socialize. But after a year or two, I realized it wasn’t worth it.
Even at doctors’ offices, I’ll feel alone. I’m surrounded by people almost four times my age in the waiting room for my specialists.
Sometimes, those people will stare. I know they’re wondering why a “healthy” girl is in the waiting room. If you’re really lucky, they’ll even make a comment towards you.
“Oh honey, what are you doing here? Just wait until you’re my age; that’s when you’ll really have problems,” a stranger would say. I’d just awkwardly laugh.
I’m not going to tell off an old person and say I’m disabled. All that would do is drain my energy. When I’m at the doctor, I’m already exhausted, and I just want to go home in peace. It’s not worth the battle.
Personally, I don’t want to think about how sick I’ll be at 80. That thought alone would send me into a spiral.
Either way, whether I was surrounded by a bunch of people or in my bedroom alone, I knew I was going to feel isolated. That pit in my stomach won’t disappear with an environment change; it’s always there.
I’m telling all of you this to show that, no matter what, chronically ill people will always feel alone. It’s a part of the disability experience.
I do have some friends just as sick as me (and that does help tremendously), but that very loneliness will soon follow once we get back to our everyday life.
Keep that in mind the next time you see a younger person at a specialist doctor or getting out of a handicap parking spot. You never know how sick someone is.
Be kind; that’s all we ask.
Sincerely, Abbey