Thoughts from a person affected with EDS
EDS--point of view
I have Ehlers-Danlos Syndrome. This means my mortal enemies are as follows: contact sports, ice (and by extension, winter), anything from which I can fall and objects moving at speed faster than which I can catch them. This leaves very little out. I feel like I’m afraid of everything and nothing. I’m afraid of potential—anything that has the potential to hurt me.
My text book explanation is this: I have genetic skin disorder called Ehlers-Danlos Syndrome. The collagen in my skin is really weak, so it causes me to bruise, cut and dislocate my joints easily.
What the text book explanation doesn’t say: My skin is really soft, and by extension of the fact that hair is dead skin cells, so it my hair. I’m very flexible and my joints don’t dislocate as easily as one would think. I’ve never broken a bone. My clotting time is fine. My feet hurt a lot, I can’t play sports, and I never had to take Phy. Ed when I was in high school.
I found out I had it when I was seven. It was exciting. I had a Syndrome with a capital “s”. Something that made me different, something that made me stand out. I ran home in my yellow sundress and told dad as he clipped the grass underneath our evergreen trees. I miss his troubled expression as he ran to the house to talk to my mom who had shut herself in her room. I can’t even imagine what their lives must have been like, raising, and watching after and worrying about a child with a Syndrome.
We managed though. With knee pads and elbow pads and lots of Band-aids, gauze, tape, wet paper towels, antibiotic ointment, stitches, steri-strps, butterfly sutures, Ace bandages and trips to the hospital, we managed. It’s genetic, but no one else in my family has it. Oh, they my have signs of it, but they don’t HAVE it. Not in the way I feel I own it, possess it. It’s my disorder, my dysfunction, my disease.
There are five different varieties—more now, I think. At least that’s what the Ehlers-Danlos National Foundation says. They are the ultimate authority on all things Ehlers-Danlos; maybe they can come up with a standard pronunciation and teach people how to say it. I have the Type 1, the Classical. I’m Classical. My skin and the way it bruises and stretches and cuts is Classical. Typical, you might say. I have a little card in my wallet that explains the other versions—ocular dislocation, soft tissue damage, organ rupture and failure. Yikes. I’m not messy like them. I’m Classical. Number one. Type A, numero uno. I cut, I bruise, I dislocate. End of my story.
We’re often misdiagnosed. Lazy, clumsy, hypochondriac. Doctors don’t understand. If they do, it was one day in med school or one article in a journal and “Oh, that’s something with soft skin, isn’t it?” It’s rough when I know more than the doctor. “No, you have to put the stitches in deeper. No, deeper. Deeper than that! Otherwise they’ll—” SNAP! “—pull out.” Doctors don’t listen.
I have bruises everywhere. The scar tissue—what they call pseudo-tumors—on my elbows make my self-conscious when I wear short-sleeve shirts. People whisper. I see them. They’re afraid to ask. I don’t wear short because my shins and knees are covered with reminders that I can’t ride a bicycle, roller skate or not watch where I’m going when I walk on uneven pavement. Don’t even get me started on medical bills. I start a new job and health insurance in involved? I’m in.
It’s a pain in the butt. I’m not gonna lie. I sometime feel quite sorry for myself and how did I ever get into this predicament? Look at all the things I can’t do. No football, no rough-housing with a boyfriend, no volleyball games with friends. I have to rest a lot, especially at malls or Summerfest or in Chicago or whenever a lot of walking is involved. It frustrates the people I’m with and it frustrates me. I hate it that my body can’t keep up with my mind. It’s hard for me to admit defeat and say, “I can’t. My body can’t handle it.” I can’t even find a doctor to tell me how this is going to affect me as I age.
But I’m not crippled. I’m not made of porcelain. I don’t need or even want tears or sympathy. I get along just fine. I just need some understanding, a few extra minutes to look like an 80-year-old woman when crossing the wintry Wisconsin ice. And don’t invite me to play your flag football game. I’ll referee.
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