My Inner 'Chicken Little' That Is Constantly Worried About Getting Hurt Due to EDS

In my house, there is a bar. It is a small corner bar behind which we have stored over a decade of gifted and acquired alcohol we rarely drink. My roommate is a bartender, and we lovingly call the bar the Broken Bodhran, with a celtic knot work drum hung on the wall above it. The wooden bar corner stands at a right angle from the far wall of the room, and past it is the door to the hallway. The height of it is about a centimeter below my hip bone, which I know, because in the first year I lived there, I had a bruise in that spot almost constantly.

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

 

After we realized my aunt had sported the same bruise for years, we used foam padding to cover the corner of the bar. We began EDS-proofing other spots in the house where we ran into door frames or tripped over things, and stairways which were dangerous got landing lights. I put bright colored post-it notes on the doorway to my room, like air traffic controller flags meant to wave me down the right runway.

Proprioception: from Latin proprius, meaning “one’s own,” “individual,” and capio, capere, to take or grasp, is the sense of the relative position of one’s own parts of the body and strength of effort being employed in movement.

Injuries are a common complaint that leads to an EDS diagnosis. Constant sprains, particularly the same joints over and over, with no breaking of bones, are strong indicators. By the time I was 17, I had severely sprained both ankles and wrists multiple times, and dislocated my knee once. During a Live Action Roleplaying event, I got run over by a man twice my size while wearing flimsy ballet flats. The bones in my foot jumbled like marbles in a sack and I panicked, hastily shoving them back where they belonged just to get rid of the wrongness feeling under my skin.

In my 20s, I got a tattoo along my upper spine, and discovered it to be the most painful ink I’d ever gotten. I leaned with my chest against the back of a chair and squeezed the metal bracing so hard I dislocated my hip. I had physical therapy for four months to make walking less painful.

Kinesiophobia: an excessive, irrational and debilitating fear of physical movement and activity resulting from a feeling of vulnerability due to painful injury or re-injury.

It’s challenging, to explain to someone how proprioception and kinesiophobia strain your mobility and make it difficult to function. Those two things together seem like hypochondria and anxiety, like two issues people think you should just be able to “muscle through” and “overcome!” Except, they aren’t.

Imagine you had a part of you constantly wailing that the sky was falling. Kinesiophobia is my Chicken Little, assuring me I will hurt myself if I do that, that I must always be careful. It is the drop in my stomach when my heel comes down on a step just a little bit off, and I tense and panic and snatch at the railing. It is the steady increase of anxiety as I get tired, because I know the active observation that replaces my crap proprioception gets lax when I’m tired. I do a task a thousand times, and on the thousand-and-first time, I turn my ankle.

So, as you can guess, the worst part of my Chicken Little is that the little craphead is right. The sky is falling, and he’s got the evidence to prove it. I have a lifetime of strains and sprains and utterly ridiculous injuries like tripping over my own foot or falling up the stairs that he calls on.

What do you do when your Chicken Little is right? I save the strength, and I use my resources wisely. I use a chair sometimes not because I can’t walk, but because pain is exhausting and I don’t need to walk into a door frame today. I pace myself, and I take on intellectual tasks over physical ones because they don’t demand I use up my resources before I’ve climbed the stairs to my room for the last time that day. It doesn’t quiet the voice in my head constantly alert to the possibility of injury, but it does give me the wherewithal to handle that voice.

The sky is falling!

It’s OK. It’s always falling. I got this.