Waking up with Ehlers Danlos Syndrome
I have Ehlers Danlos Syndrome, a rare connective tissue disorder. In my case, it is considered an invisible illness. But it is not invisible. Sometimes it’s all the world sees.
The primary symptom for me is daily dislocation of my joints. There are many other little symptoms, like too-soft skin, poor healing ability, brain fog, and an unpredictable reaction to medications. It’s genetic, but my parents don’t have the same issues I do.
I’m not going to get into all the details here. I’ll just try to relay a few minutes of my day. Most mornings, I wake up to pain. Sometimes the pain is so bad tears come to my eyes before I even open them. Sometimes it’s confusing until I remember to calm down. To think. “It’s just a dislocation. I can fix this.”
I was supposed to grow out of this. When I was a kid, they said I just needed to exercise more. I just didn’t work hard enough. I was told that the torturous pain in my legs and arms was just “growing pains” and that everyone got them. Everyone else could handle the pain just fine. I was just weak. Self-indulgent and lazy, making things up for attention.
When I wake up, my left arm is usually useless, dislocated, bones and muscles unable to find the leverage they need to lift off of the mattress. I concentrate through the pain and ignore the fear of being helpless, vulnerable. I triage. “Is it the collarbone or just the shoulder?” Probably just the shoulder. I grab my right arm and yank it hard so it lines up correctly. That arm is almost always completely dislocated with some pinched nerves and arteries, which can cut off circulation.
So far, I’ve always gotten the feeling back pretty quickly. Relocating the cold joint brings the kind of sharp, extreme pain that makes me go a little fuzzy. I hear white noise and get tunnel vision for a minute. Sometimes I forget how to talk. I reach over and turn off my alarm.
You might be wondering how I sleep through having a severe dislocation. A person can get used to anything. I’ve been this way since I was born. I used to be much more flexible but the arthritis has stiffened me up some. I am so grateful that I can still walk and go to work and dress myself. I didn’t expect to be this “normal” in my 40s. I appreciate I am in the middle of a best-case scenario.
I adjust my hips, knees, ankles, toes. My thumbs and wrists. I distract myself by thinking about what I will wear today. I love being able to wear jeans to work because it makes my sneakers look less stupid. I can’t wear heals because my toes dislocate and the bones in my feet have collapsed so I need strong arch support. It makes me look too casual at work. But my inner self has poise and dignity and pretty shoes. My invisible self is a ballerina, a runner, an athlete.
Often, I was told not to stand or sit as I did because it looked strange and made other people uncomfortable. It was undignified. My legs twist around each other. I like to stand with my weight on one leg, the other knee loose and bent backwards slightly, relaxed. My arms brace each other behind my back, squished between my lumbar and the wall. Or my hands fold together, alternating direction of hyperextension as I fidget.
I never told my parents what it was like to be unable to run at recess. A dislocated knee would make me fall and the kids would laugh as I tried to reassemble my own body. The teachers reprimanded me for being lazy when I tried to sit out a game. Uncoordinated and slow. Antisocial. In 9th grade, my gym teacher made me walk a mile on a dislocated hip because she didn’t believe me. She thought I was being obstinate and dishonest.
I lay in bed for a few minutes, determining how best to realign my spine. Sometimes, I admit, I indulge in a little dose of self-pity as I lay there. But I am strong and have stuff to do. I can fix this. I twist and bend, lifting one foot, then the other, realigning my upper vertebrae, inhaling to help pop ribs back into place as I stretch. I’m careful because I could easily injure my spinal cord, or cut off the path of blood to my brain. I know when that happens because I get a specific kind of terrible headache. But I know how to fix it. Fear does me no good.
What others see is someone who is clumsy and weak. Someone who works hard and long but sometimes comes in later than others. Someone who fidgets because she is hardly ever comfortable. My tailbone twists, my hips ache. Sometimes I spend all day with a dislocated ankle because it is too difficult to put it right by myself. But I can’t miss work every time I have an inconvenient dislocation. I avoid stairs because my knees will shift backwards if I’m not concentrating, and I’ll fall. It’s like living on broken stilts, constantly balancing, constantly shifting. It makes me look lazy, bored and disrespectful.
I sit on the edge of the bed. It’s high because if I sit lower than my knees, my hips dislocate. But I am invincible. I am going to have an awesome day. I will be productive and present. My feet touch the floor and it feels like I’m resting them on a bed of nails. The bones, the muscles, the skin. It hurts and it’s going to be so much worse when I stand. This is another part the doctors don’t believe. But it will get better after the first few minutes. I’ll get used to it. I can do anything.
I have a minor case of Ehlers Danlos Syndrome. Many people don’t realize how much “connective tissue” is in the human body. Your eyes are mostly connective tissue. It holds your heart together and in place. Your stomach and bladder. The tiny tendons connecting the tiny bones in your ears. I am so lucky that I haven’t had to get dozens of surgeries yet like many of my fellow zebras. I don’t have tubes for putting nutrients in or for taking them out. I can still see and hear. I am very lucky.
I put the finishing touches on my spine now that the weight distribution has changed. I inhale and brace myself, standing slowly. Sometimes pain hides other pain, so I don’t want to rush it. I gently take my first step and when I find I’m solid, I head across the floor like Bruce Willis walking on broken glass in Die Hard. I’m an action hero. I get used to the pain as I go and wake up a bit more as the pain-fog clears my mind.
Until I was about 35, no one said I was different. Then a chiropractor tested me and told me I have this syndrome. He said it apologetically, like he thought it would make me sad, but it didn’t. It made me so happy.
I wasn’t weak or anything else they had told me. He gave me a label that said I was strong. I am honest and industrious and intelligent and brave. It’s not my fault. And I’m not crazy. The diagnosis gave me something to research. It helped me find a group of rare people like me. Some better, some worse, but all humans in this same fight – The fight to be seen for who we are and not for our symptoms.
Society has labeled some illnesses as “invisible”, but there are always signs. Little things. You don’t know anyone until you walk a mile in their shoes. If you see someone who looks lazy or slow, don’t make assumptions. If someone looks fine but has a handicap tag, don’t make assumptions. If someone is short with you and seems impatient, don’t make assumptions. Everyone has a story. No matter what traits or symptoms are showing, somewhere inside each of us is an invisible warrior.
For more information on Ehlers Danlos Syndrome, I strongly suggest doing research yourself as most doctors have little to no knowledge of this rare syndrome. https://www.ehlers-danlos.com/what-is-eds/ is a good place to start.
I also welcome any comments here that might inspire sharing knowledge or support. There are some wonderful Facebook Groups that have been a huge source of help for me to feel less alone in my weird little world.