Norah, at only eight, has trouble describing her chronic pain from EDS – joint instability, subluxations, fatigue, so many challenging and life altering symptoms. She finds it hard to rate her pain on a ten-point scale when asked by the doctor. Together she and I spent weeks talking about her feelings, her body, hard things. A bit at a time. So she came up with a spoken word descriptive of her pain to help people understand. I called it a poem but she told me that it didn’t rhyme. The feelings and words are hers, I put them in an order and hope it did her justice. The poem was shared on Instagram where she read it out, viewable HERE, it took me quite a while to share it. Because it’s sad, but it is also beautiful, and she thinks it might help other people. I was asked to put it in a written format for accessibility which I have gladly done.
Pain is not a number. Ten will never be big enough.
Pain is me today, but maybe not tomorrow.
It arrives in bruises and tears, from slips, trips, falls.
Pain is the reason I forgot how to spell in my English test.
It cracks, in and out my joints.
Because I am little, adults can’t imagine that so much pain would fit inside my body. But it’s bigger than me. Folds inside like a letter in my body envelope.
Pain is saying goodbye. It is stopping. It is my dance shoes that I no longer use.
Pain is at night and in the morning.
Not just for ‘bad days’.
Pain has sharp edges and sometimes flashes like lightning; sometimes it shakes.
It’s a cry. It’s angry. And very, very sad.
Try and rest, they say, sit down for a minute. Use heat. Medicine. Take some breaths. Draw a picture.
Rest to fix pain. It is not enough, because they both have 4 letters.
Pain makes the clock go slow.
Pain is a dark red. Almost brown. The colour old scabs go.
It makes me not like my legs, bumped with blue, green and purple.
Pain is the sound my wheelchair makes, the front sticky wheel.
It is all the letters in ouch. It is messy, and hungry.
I didn’t know about this pain when I was 3.
I wish I could explain pain, more than a number, or colour. See it. Then they could pick it up, pull it out like a thorn.
Pain is not a number.
We are happy for this to be shared with credit to us here to help raise awareness and to bring comfort if we can. Please don’t formally publish or use without permission first as its a little girls very personal account. Norah loves to receive messages of support, people sharing stories, personal experiences or suggestions for pain management and EDS. We appreciate the warmth of the community.