After Years of Ignoring My Pain, Having Children Gave Me an Answer

When I began writing this, I hadn’t quite figured out how to tell my story yet. I suppose this is the effect of trying. 

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

Due to life circumstances I had to think like an adult by the time I was 5, so getting dizzy, blacking out or laying down on the floor while rooms spun, or not being able to run as far or breathe as well as the other kids, were just normal parts of my childhood.

Also being very naturally competitive, I tried to do things every kid does, all while completely oblivious to the problems arising and advancing in my body due to hEDS — hypermobile Ehlers-Danlos syndrome. A multi-faceted, “creative” disease, where dysautonomia and the resulting POTS (postural orthostatic tachycardia syndrome) are par for the course.

When I was swimming competitively I didn’t know why my arms and legs would go numb, I only knew that if I pretended in my head that I was still moving, I could go pretty fast. Nobody seems to think that it was unusual that I got out of the pool shaking, barely able to stand and barely breathing.

When I tried gymnastics, I was praised for my flexibility and determination, but nobody thought it was unusual that I had flimsy, weak limbs and occasionally fell over from dizziness. They said I had potential, but needed to work harder. When I found dance and fell in love with ballet, I learned to dance dizzy. To tried to balance myself and turn tension and pain into beauty. It worked for a while. Slowly, ever so slowly over the years of attempting to make beautiful art and tell stories with my body, my body stopped.

Looking back, I know it was whispering to me little bits at a time saying, “This doesn’t seem right. Maybe you should find help with this?… Why are you so tired?… Should your heart really be racing this fast?… Being nervous is normal, but should my hands be shaking this much?” It whispered, “I’m hurting… I can’t move today…” but I didn’t know how to listen, so I didn’t.

Eventually I found myself no longer dancing regularly. I went into academics and excelled like I had with everything else, nearly causing retinal damage from a vision disorder also caused by ehlers danlos syndrome that I didn’t know I had. There was never an in-between in any other part of my life. Never a B grade because anything less than 100% my body would give up.

A few more years passed and my children were born. Again I was exhausted, healing slow and fainting in quiet moments alone when I got up to go to the bathroom too fast. My adult brain recalled childhood and said, “That’s funny… it seems to be getting worse.” Then the baby would cry and I put it out of my mind. The two children who made it into my arms alive arrived with their own bundles of hidden problems. Swathed in cuteness and sweetness was this condition I’d unknowingly passed on, threatening their lives and making us panic every time we heard a cry, or heard too much silence. They struggled to eat and to breathe, and no one knew why. 

Sam is now 8 years old. He hates the heat, runs out of breath and gets dizzy when he gets up. But now we know. Now we hold him. Now we get him enough water, salt and physical therapy to help him handle his world. Gloria is 6. She gets wobbly and has painful cramps in her legs. But now we know. I massage her gently and laugh and fall with her when she falls down so that it’s fun, rather than scary. I make food with ingredients that won’t trigger our mast cells and make the “wobbles” and headaches get worse. I’m 30 in a 70-year-old body. But now we know. And I can take medications that open my neuro pathways so my muscles no longer squeeze the life-blood from my arms and legs when I move, and wrench my fragile spine into injury. Now we know. And when I feel my heart racing I can say to myself, “Sit down my love. Ask for help.” And my wonderful husband will come to help me finish what I began.

It’s not the life I ever dreamed of. But now we know, and now… I can build a life of my dreams because now I’m not alone. Now I know how to hold on, so that my children can lean on me, and we can lean into life together. Never discount the incredible gift you can give to someone by choosing to know.