I wrote this over the summer one night I was in pain and couldn't sleep...and was very angry with my mom because that was back when she didn't support me getting a wheelchair. I was really sick at that point and for an hour just hashed my feelings out on what it was like to have EDS and why it happened to me.

Dear EDS,

You will never know…in all of you centuries of existence…how much I loathe and despise you.

Why did you pick me? Why did you pick me to have the pain, the endless ebbs of fatigue…the bone crushing fatigue that puts me in the thickest fog through which I see no lighthouse. The fatigue that causes me to have the cognitive skills of a middle schooler…going from advanced algebra to simple math…the dire need for a whiteboard to remind me to take out my trash…the PDA to tell me my favorite show is on TV every Sunday at eight pm. If anyone asks me what I did yesterday…I will not be able to say and if I can I’ll need a lot of time to think about it…usually based on which doctor I saw that day.

The pain you cause…physically, emotionally, spiritually, is enough to fill a million black holes.

You’ve made me cry…the pain from my joints…the crackling of an elderly woman in someone so young…the harsh noise of joints popping in and out...grinding and wearing away. The oh so simple injuries…holding a book, stepping off a curb…sleeping. I am supposed to be in the prime of life and already have joint damage and arthritis. I write like a child…I have no coordination from the clunky braces I must wear to hold my thumbs together because my collagen does not.

The muscles that work overtime to keep me together…I am so thankful for them. But…they too in their struggle…cause me pain. The tightness…the spasms that leave me unable to move…like I’ am paralyzed by my own body. The burning…like an internal wildfire that is impossible to douse.

Nerves…they only send me mixed signals. The shooting…and stabbing…like needles are being pushed through my skin into my legs, my ankles, and my head.

You give me migraines that make me want to just pop the balloon that is my brain. I wish I could cut the nerves so I don’t feel it sometimes.

My skin hurts and burns like the sun is on me…while I’m cooking…while I’m washing dishes…I usually feel like I have little insects crawling around under my skin just to annoy me.

I took the outdoors for granted…hell I took everything for granted. There is no place on Earth I’d be able to tolerate. Cold…leaves me numb and speechless as I shake and look at my fingers turning patriotic shades of red, white, and blue….and feeling like I am literally freezing to death.

Heat…zaps me dry. I wilt in the heat…take any energy I have and cut it in half. The sun is worse…it burns me too. I am forced to hide indoors in the dark with a fake induced spring.

I used to love food…I would eat anything and everything. EDS you took that away too. Now I’m lucky if I eat three meals a day and finish them. I always have to endure spasms after I eat solid food…it’s a lottery with liquids. Sometimes it doesn’t happen, but other times I’m swallowing it again. Rarely…it will wind up all over the table in a huge mess I feel helpless to clean. I wake up with pain…in my abdomen from bowel dysfunction…in my chest from heartburn…and whatever I have eaten will be tasted even five hours later. Thanks…that’s a real kicker.

EDS, you also decided to bless me with a wonderful gift called Dysautonomia. I am literally alone in my struggle, as this is my special gift from you that you didn’t give my mom or my sister.

Standing up…sitting up…I never thought something as simple as that would be so hard. I never thought that my nervous system would lose control of itself. I always have to think if I fall what I will hit first. Metal cabinets…desk chairs…the door? May I tell you that passing out while sitting in class never goes over well…especially when I clonk my head on the desk? That my French professor had to fight to keep me semi conscious during class so that I may actually learn the material this time around? Did you know that I almost got hit by a bus because I was so dizzy I didn’t even see it?

Of course you did…because you watch and laugh at the havoc you wreak.

Do you watch me in bed…during the day…all day…because I’m either much too tired, or dizzy, or in pain that I risk falling if I even sit up? That my world seems oh so small on those days…

I am nineteen. I should be out with my friends, going to the mall…no. I don’t watch the late night movies…I don’t go to the mall…I’ll go to the diner and Starbucks but that is all. I miss shopping…but before you decided to cause my collagen to quite suddenly betray me…I loved to shop. Now it is merely torture. I wish I could have given my sister what she deserved while she was here…but I couldn’t because I felt like a walking corpse…all mangled and dislocated.

Emotional pain…ah the emotion so deep I can’t even express it. I am isolated…among my peers…even among my own family. You present yourself in so many ways, EDS, that my mother nor my sister can understand my battle.

The fights…the comparison…the accusations of lying…faking…and God I must be crazy for accepting the pain medication because I was sick of crying myself to sleep every night because I don’t remember the last time I didn’t feel pain…I think it was ten or so years. Yes…that makes me nine years old. You took all those memories away…except the one of me on the trampoline jumping free…like I was getting ready to fly away.

The guilt…that my mother has to take a job that she can’t even do because of me. Because I cannot stand for more than fifteen minutes at most without my world spinning…it’s an hour if I’m sitting down. Who would hire someone who misses so many days? The thousands of dollars spent on medications just to make me more comfortable…the doctors who say “I’m sorry but I’ve only read about this disease in textbooks”. Or better yet, “What is Ehlers-Danlos Syndrome and how do I spell that?”

The nineteen years I suffered without a diagnosis because I was just plain crazy. No your hip can’t come out on it’s own…it’s impossible. No, you are sensitive to pain. No, you are depressed. With your body you would have a great future in the circus…

No I am a zebra wearing a horse suit…and no I will never be in the circus.

I don’t care about the long term. My life is now. Because I’m not going to get better…no matter how much they tell me to exercise…their weights will shatter me and my heart will not adjust to their aerobics. Good luck scraping me off the floor.

Spiritual…why would God do this to me? I’m a good girl…yeah I’ve messed up but hasn’t everyone? I usually do what I’m told…I tell the truth; I eat my veggies and get straight A’s.

So…why me?

And if I did anything to deserve this hell…tell me what it is and I’m telling you I’m sorry. If I could…I would give you back to God…the one thing. I’ll take all the other crap life throws at me…I just wish I could get a refund on my collagen.

I’m broken…I can’t think of anything in this body of mine to which you haven't spread your joy.

And I will go on…swimming in the fog…crawling on the floor…eating my soft food and drinking my Gatorade…forgetting my brother’s birthday…all for you.

Someday…the docs will find the gene that went wrong…and they will finally vanquish you.

Until then, It’s up to me to conquer you myself.

And I still hate you.

I am not quite so bitter over it as I was then. But the light of the past few days has prompted me to share this with you all...as other people who have EDS could be the only ones who could possibly understand how frustrating it is to have to live with these feelings and look towards the future and hope instead of fear.

Peace be with you all

**Hug**

(((((hugs)))))

That's really good. You should blog it, or otherwise put it 'out there' more widely.

{{Hugs}}

I have to edit it and revise some parts and add other things.

It really was just the ramblings of a very pissed off Stephanie.

I think you should - if you want to. It's the sort of thing that people's friends and family might find it useful to read, as well as people with the condition themselves.

I most definitely agree that you should post this! I found it to be a great way of explaining what it's really like to have EDS.


Mind if I refer to it sometime if a friend asks about EDS?

sure that's fine

Wow Steph, if that's ramblings, what can you write if you put your mind to it?! That is excellent. I wish I were able to put it into words like that - when I try to voice my annoyance it usually just comes out "Ahhhh *&%*!"

Do you mind if I show that to some offline "normie" friends?

Sure...just let them know it's a work in progress

My PM doc and I converse through email...my first time he said to me that I have such elloquent language and that I can communicate in writing so much better than he can...he had my mom and I proof a pamphlet HE wrote!!!

The English department is after me...haha!

I am trying to write something "real" and it's just bits and pieces right now but I have the rest of my life to do it!