Tonight on Grey's there was a sick band geek who said:

"Once people see you as sick, they don't see anything else."


I think that she has finally put into words how i've always felt. As i mentioned before i have a disease. It's called Ehlers-Danlos Syndrome (EDS). Simply put, my body doesn't produce collagen. I guess the details of it doesn't matter.

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But what does that mean for me in my day to day?

Well, I'm in pain constantly. I don't do steps--my body can handle 3 or 4, but a flight of stairs make my legs ache. When there is 'severe' temperature/weather changes, my pain level increases. (thanks to living in VA--this happens often). Standing for a long period of time doesn't work for me either. I'm on high doses of pain meds just to cut the pain. Some days they work, others they don't. My ankles roll while i'm walking. My hips pop out frequently. and my knees dislocation often. Fortunately, everything typically goes back into place when it pops out. I typically compare a lot of what i deal with to arthritis and feeling like i'm 79 years old.

let's see, what else. I scar even with the smallest cut (i have this scar on my upper lip where i was hit with a matchbox car when i was two or so--i have another on the side of my right knee where a dogs claw scratched me at least 10 years ago). i have soft velvety skin. (ok, that's not really a bad thing). I'm super flexible which leads to a lot of "party tricks."

The bad part (wait, is this really the only bad part?) is that i love to dance. A night of dancing wreaks havoc on my body and walking is not my friend for the next (at least) 2 days... ...sometimes more.

The disease is hereditary. I inherited it from my mom and my sister was just diagnosed. My currently-non-existent-but-future children will have a 50/50 chance of having it as well.

The great part about this is that I have a type of the disease that really just affects my daily life as i previously mentioned, but it will get worse as i get older, as opposed to the type that affects your life span.

The bad part is that, while they'll deal with things that i've dealt with, they could have symptoms way worse than mine. Or they could luck out--like my mom--and have very few symptoms.

So while i fortunately 'control' the type of the disease that i have, i can not control the severity of it.

(maybe i'll talk more about my EDS on here).

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Back to what was said on Grey's--

Once i was diagnosed, I kept my disease quiet. I didnt want to be known as that girl. Because she was right, "once people see you as sick, they don't see anything else."

And i truly felt that way for a really long time. It was like if i let people know, i'd become 'weak' or 'disabled'. and i just wanted to be known as being me. not my disease. So i kept it hidden for a long time and quietly deal with the pain.

Then i met Anna--my scottish friend--via facebook. She also has my disease. She unfortunately has more severe symptoms and is now facing Crohn's disease as well.

She's taught me, mainly just by example, that hiding what i deal with doesn't help anyone. First, EDS goes significantly undiagnosed--so talking about it raises awareness. Second, talking about it, makes my friends aware to help me when i might need it and don't want to ask. And, third, not talking about it doesn't make it go away.

For so long i lived by the words that the band geek spoke that i could have used a friend.

Now, I'm not afraid to tell my friends about it. I feel that it might make them uncomfortable sometimes, and i don't want them to be afraid to ask me any questions about it. But it's also helped out in that they know i'm not supposed to lift much weight, so they keep me accountable and make me put down the heavy object or to grab the elevator instead of trekking up the stairs like i would do.

(i'm stubborn, independent, and hard-headed, so i'm constantly pushing myself to the limit and past it)

....but now that my friends know, they help me. They stop me. And they don't make me feel 'different' because i need the help and i can't do it on my own.

and i love them for that.

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Moral of the story:

Even if you don't want to shout your differences from the rooftop (or your soapbox), don't hide it from your friends. Friends are there to support you just like you are there to support them when they need the help.

And if they can't handle the truth about you, then they suck at life anyway and you can find better friends. :)