Ehlers-Danlos Syndrome

When I smile and say, “I’m fine” |Chronic Illnesses

“Hey! How are you? How’ve you been?” 

Common questions, ones we hear all the time. The average person can pause for a split second and assess if they’re great, ok, or having a bad day. For someone with a chronic illness, it’s a complicated question.  Our version of “great”, “good”, or a “bad day” can be drastically different from most people’s. 

I have Ehlers-Danlos Syndrome, or EDS (among other illnesses that often go hand in hand) which affects me 24/7. If you’re curious to know what EDS is, check out my previous post

Disclaimer: Everyone’s experience with EDS is different. Some are mildly affected, where as others are completely disabled. No two experiences are the same. This post is true to my personal experience.

Personally, my idea of being “great” means that I have only felt like vomiting a few times, only a few joints have dislocated, and I was able to be out of my house for more than a couple hours. To most people, that sounds like a pretty rough day. 

So…what do I say? 

For whatever reason, I always feel a little anxious. I hesitate. It’s as if the words BE NORMAL are being screamed throughout my body. 

I tend to channel Elsa. “Conceal, don’t feel, don’t let them know” is basically my life motto. 

After a brief pause, I snap into gear. Most of the time, depending on who is asking, I respond with a generic “I’m fine.”  I think we all know that people usually ask these questions out of habit, or an attempt to make some small talk. They don’t actually want a detailed explanation about the pain keeping you up at night. It would make them uncomfortable. 

Imagine…

Person being polite: “Hey! How are you?”

Me: Not great, actually. I woke up after a painful and interrupted sleep to find that I dislocated my shoulders. I sneezed and something in my lumbar spine went out of place, so every time I step forward with my left leg I feel a bolt of pain shoot down to my toes. I’m hungry because I haven’t been able to eat since yesterday. I can’t eat until I know I’ll be home for the rest of the day because I can’t digest my food and it makes me sick. So my blood sugar is pretty low, my head is painfully spinning because of it, and I’m nauseous anyway because my stomach hates me. My entire body has pain running through it, I feel like I’m going to pass out, and to top it all off some old person glared at me when I parked in a handicap space because apparently it’s impossible for young people to be disabled. I’m just trying to keep it together so I can go home and openly feel the extent of what is going on in my body right now.

Person: ……… 

Me: ….. 29341472_10156416049682932_422086429_n

Most of the time, that’s not exactly a great conversation starter. So, I put on my mask to cover what’s screaming inside of me, and I say what they want to hear so we can move on with the conversation. 

I’m not fine, though. Not often, anyway. Sometimes I’d like to be able to be honest, but most of the time, the idea of actually telling someone how I’m doing sounds exhausting. It also sounds like admitting what I try hard to not think about. Plus, who wants to be around someone who says they’re feeling bad all the time? (Spoiler alert: not many people) 

Some days I’m brave. Some days, I take off my mask and I am unapologetically as broken as I feel in the moment. With my honesty though, I get a lot of shocked expressions, disbelief (because I must be exaggerating since I’m so young, right? That’s a post for another day), or my personal favorite, a list of supplements/workouts/diets/positive thinking exercises/etc. that will for SURE cure me if I’d just give them a chance. 

See, I’ve found that people will either try to dismiss the severity of what I’m dealing with (either out of love or disbelief) because the idea of it being true is too hard for them to grasp, or they’ll try to fix me.

Sometimes, I can brush it off. Sometimes, it hits me deep and makes me regret opening my mouth. I don’t want to hide, but I also don’t want to hurt more.

Most people mean well, I’m sure. They don’t realize how their responses can hurt, and that all that is really needed is a little sympathy and an open ear. Just to be heard, validated, and feel cared for can change a persons whole day. People’s responses and the damage/love it can bring can be a long post on its own. 

In the end, it’s a gamble to be honest, and in reality, the truth is probably more than what someone signed up for when making conversation. So most days, a simple smile followed by, “I’m fine” is all I will let out. 

 

 

 

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