To Those Who Will Never See My Worst Days With Ehlers-Danlos Syndrome


Almost none of you will ever see me on my worst days. My most vulnerable hours are saved only for my hero husband, and even he will never really understand. When I’m in a flare, I wouldn’t think about leaving my house… or my bed or couch. I can’t handle any movement: no walking, let alone standing, on those incredibly painful days. Fortunately, I own a wheelchair now, so my husband doesn’t need to carry me anymore. During these times, there is no relief, not even through resting and being completely still. I wait impatiently through the misery using every technique I’ve been taught in pain management. However, when the pain reaches a certain point, nothing helps anymore…

not pills,

not heat,

not meditation/breathing/distraction,

not rest,

not slings/wraps/braces/KT tape,

not orthotics,

not compression socks,

not all the pillows,

not my cane or wheelchair,

not ice,

not working from home,

not topicals/rubs,

not physical therapy…

I try everything I know. Yet, at some point, my pain will spiral and become uncontrollable, no matter how much I try to prevent and react to it.

It doesn’t take much to flare with Ehlers-Danlos syndrome

a wrong shift in bed to wake up with my shoulder partially out of socket,

one step in which my leg goes a centimeter too far to pop my hip,

too deep of a breath to sublux a rib,

an unconscious reflex when something falls and I attempt to grab it,

the straining of my wrist opening a jar,

my foot collapsing its arch because I didn’t put on my prescription shoes yet… the list goes on.

Every movement is a possible danger that can set me back hours, days, weeks. It’s exhausting that I need to calculate every single move for the rest of my life. Nevertheless, I keep moving. I keep taking deep breaths. I keep laughing about this disaster… because I’ve already cried so much, and I know I’ll cry again.

artwork of sprout growing with sun shining down
April’s artwork, titled “Seedling”

Now it’s morning, and I feel hopeful. My day will unravel into night when my pain is always the worst. Therefore, I must appreciate right now. My pain is there lurking; it is constant, but not always unbearable, and for that, I am grateful. I know the worst will return: the times when it feels as though, at an atomic level, I am disintegrating, that my bone ache is dissolving me into a heavy, useless puddle, that my bone marrow contains black holes and my skin is the event horizon, destroying everything inside myself.

I worry that one day my predictable excruciating night pain will also be how I wake up every day, and there will be no periods of relief anymore. That day is not now. Now I’m going to keep telling myself that I am OK at this second and hope for the next minute, too. Breath by breath, my day will unfold, and I will survive… because what other choice do I have?

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