Fighting Ehlers-Danlos Syndrome With Strength and Stubbornness

“From the moment you could walk, I knew something was wrong, I just never understood what was going on with you,” my mother says now. “What could I have done to protect you if I had known?”

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

What I was experiencing were subluxations, and at times full dislocations. Before I could even speak I would stop in the middle of play and scream as though my entire body had locked up. My mother was at a loss on how to help me, and my father was a very hard southern man who discouraged my medical care. With time I was checked for ear infections and the like, but the results were always inconclusive, and my issues persisted. As time went by and I became a toddler, I learned how to get relief by popping my joints back into place. When I was able to speak, I was finally able to explain that the pain was coming from my joints, most frequently my hands and I was given the false diagnosis of juvenile arthritis. It wasn’t until my 16th year that I was finally given my true diagnosis: a collagen abnormality known as Ehlers-Danlos syndrome.

Most people don’t know how odd I am or understand why I keep my strange ways. I have never experienced a day or a moment in life without pain and growing up with chronic pain has definitely shaped who I am as a person. I want to be remembered as a beautiful, intelligent, hardworking girl. I am covered in scars because my skin tears too easily, and stitches never seem to hold like they should. Headaches and faintness plague my body because of POTS, which is associated with EDS. In all of my weakness, I am strong.

I am exhausting and stubborn. Partners always like the idea of me because I am beautiful, kind and vibrant, but they are never prepared for the ugly side of my disorder. I have been trapped in the bathtub and unable to escape without help. I struggle to do everything I would like to, but can still work most “normal” people into the ground on a good day. I persevere, until I fall apart. I run myself full throttle and hard into the paint because I know what I have always known: my days are numbered.

There will be a day when I cannot climb the stairs or bathe by myself if my heart valves don’t stop me first. There may come a day when my organs prolapse or I go deaf simply because collagen is in every body part, and weak collagen wears more rapidly. I choose not to take medication because I know there will come a day when I need it, and I don’t want to start building a tolerance or destroying my working parts with side effects. I don’t wear braces because I believe that for me, learning to control and stabilize my joints through my muscles is far less limiting; when I begin to wear the braces I believe I will lose muscle tone and have sores from my weak skin tearing.

There will be a day when I cannot, but today is the day that I can, and I will.

To my lover, I say, “Please excuse me if I crash and burn sometimes. Let me live my own way and make my own choices. If you love me, give me kindness and understanding. Let me fight my war with dignity and be kind to me even when I cannot lift my head. You have no way of knowing what I go through each day, and I hope you never have to endure the pain I know. You are frustrated with my situation, and I understand. Imagine being trapped in this body smiling through the pain of a crumbling body with only the strength of a thousand feathers.”

Thinkstock photo via Victor_Tongdee.