Having Ehlers-Danlos Syndrome Is Like Being the Mother of a Newborn Baby

Having Ehlers-Danlos syndrome is like being the mother of a newborn baby. My body cannot tell me what it needs. It can only cry out in pain. It stops me in my tracks with wails that are impossible to ignore. I turn my attention and my intuition towards it throughout the day, sometimes lovingly, sometimes resentfully, and often with a heart full of grief. I stop, turn inwards, and run down my mental list: Does it need magnesium, a nap, a brace, some kinesiotape, more water?

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

Like a mother and her infant, I am called to open my heart and attune with it. I have to learn what every murmur and cry and twitch means, to learn a language with no words. It’s a 24/7 job. Spending my days nurturing this body is a labor of love, a privilege, and a prison.

Sometimes in frustration, I want to push it to function effortlessly and absent-mindedly, like all the healthy people around me. But my body has served me for years, and it still strives to please me, even now, as it is unraveling, coming apart at the seams. It deserves to be loved and gently supported in its decline.

It is my companion for life, in good times and bad. We are one. I cannot escape this sacred duty. So I embrace it, and devote my heart and my life to it, with all the devotion, tenderness, exhaustion, and grief of a mother whose infant will never grow up.