Explaining Spondylitis to Kids

Two facts about me:

1. As a teacher and uncle, I am surrounded by kids.
2. I have never hid my diagnosis from anyone.

If a kid has any questions, I am going to find the best way to answer them.

But, that is not always easy. Axial spondyloarthritis is a very complex, hard to understand, and kinda scary sounding condition. A student was recently trying to flex on me about his wonky hip. Hitting him (gently mind you) with axial spondyloarthritis received an “oh sh*t!” in return.

I am sure his hip caused him enough trouble to mention it, but my condition just sounds so much worse. So, when youngsters want to know more about your AxSpA, how do you explain it to them without totally freaking them out?

Here are my tried and sometimes true methods of youth education.

Keep it simple

Unless you are dealing with a super advanced robo-child, words like “autoimmune,” “genetic,” and “inflammation” might soar well above their heads. I mean, go ahead and try, but from my experience, when kids are confused, their brains shut off.

Instead, depending on the age, level, and attention span of the child use words and concepts they might better understand.

“My back hurts” might be all you are able to say, but kids can usually understand this. This simple phrase can also evolve into “My back hurts every day,” “My back hurts every day, and I can’t do everything I want,” or “My back hurts every day, I can’t do everything I want, and I need to rest a lot.”

Chances are you aren’t saying this to a random kid and you have a pre-existing relationship, so use what you know and adapt accordingly.

Let’s be honest. Unless this robo-child wants to be a doctor, or has a similar life experience. Keeping it simple at any age is usually your best bet. Now, if they create a Fortnite character with Spondylitis, that might expand your ability to tap into their interest.

Keep it positive

Look, be you and be honest to your true self. Don’t hide how you are feeling. But, maybe don’t try to bury the kid in your pain.

My students have told me a number of times they like me because I am so honest. I really don’t hide anything from them. If they tell me that math is pointless, I wholeheartedly agree. I follow that up with “But until you are done with school, it’s a necessary evil”. But, I treat them like the internet surged thinkers they are.

So, yes, sometimes when I am flaring, I don’t always hide how I am feeling. Especially if it shows on my face, and I know I can’t hide it.

But, let’s remember, it is not our job to “flex” on the youth. We really don’t need to prove to them how bad we are hurting right now. Again, use your knowledge of the youth in question, but not much will be gained by laying your pain on thick.

So, sugarcoat it just a little. Give them enough to accomplish what you are setting out to do, but that’s it.

For example, the only times I feel I need to explain Spondylitis to young folk is responding to “Pick me up!” and “Why do you have that wheelchair thing?” (A Rollator, which has also been referred to as “that old lady thing” which is a line that requires double explanation)

Then, I can pull out “Picking you up might hurt my back more” or “Sometimes [Because of my condition] walking across the building is difficult and I need to take some pressure off my joints.” But, I say it with a smile and I don’t let my pain voice explain it.

Don’t say anything at all

Sometimes, the use of words just isn’t needed.

Kids are really observant, and if you let your pain live in your face and movements, they might get the idea. They might have a parent or grandparent who lives with chronic pain and they are able to compare you to them.

They might see the wheelchair, cane, or rollator and know something is up and they don’t want to pry. I’m an educator, but if a student chooses to not ask, I really appreciate it. I know I am in the minority of patients who openly talk about their AxSpA, and way more want to keep it private. Out of respect to those patients, I think asking too many questions can be seen as rude and they probably should wait for a more opportune time that doesn’t come across as...

“Hey, Mrs. Jones, what is wrong with you?!”

Anyone who has had a kid who asked too many questions knows this is a valid life skill.

Sometimes, saying nothing is all you need to do.