Tell us about your symptoms and treatment experience. Take our survey here.

alt=Three community members prepare to share their story

Prepare To Share: Learning How to Tell AS Stories

We all have a story to tell. Some open people's eyes, excite the mind, or take your listeners to another world.

On the other hand, some people’s stories are boring as heck.

No judgment here. I have put people to sleep and made them check their watches more than someone waiting outside of an Apple store to get the newest iPhone at midnight.

I get it. Whether your story takes over the entire room, or provides information in a rather unflash-y way, we all have life experiences that we want to share.

And, I might be biased, but I believe everyone diagnosed with AxSpA has something to say that not only tells a story, but also spreads the name of our condition to people who might never hear it any other place.

At some point, someone is going to ask you about your condition

It is inevitable, and yes, you can tell everyone you are fine and move on. Or you can tell them a story all about how your life got flip turned upside down.

You never know when someone is going to ask, so you should be prepared to share.

Your elevator speech

I would imagine a lot of you have heard the term “Elevator Speech” or “Elevator Pitch.” Basically, be able to tell or sell something in the 30 seconds it takes to ride an elevator with someone.

Take a story that might require 5-10 minutes to tell and seriously condense it into something bite-sized.

Anyone who has tried to tell a friend or co-worker about AxSpA knows your average person has very little attention when it comes to hearing about healthcare. It’s either too complex, too troublesome, or simply too much information.

You don’t have the time to give them the full story explaining when you were diagnosed, how you were diagnosed, how you live with it, and/or what AxSpA is.

So, in order to share your story, you gotta keep it short to the most important detail. Start them off with a little taste of your journey, and hope they want to come back for more.

Well, that’s interesting!

“I was having back pain, so I went to the doctor and he took x-rays and..."

Sorry, I just fell asleep writing that...Where was I?

Oh yeah! When you share your story, keep it interesting!

What is interesting really depends on both your story and your story telling style.

When I share, I put on the character of an old man talking about when I was 12. This method, for me, is both attention grabbing, and takes a bit of the seriousness out of my story.

Look, from my experience, the only people who usually care to hear my full story are fellow Spondys. If I can quickly give them the name axial spondyloarthritis and deliver it in a way that, while they will never remember the name, they will remember that there is a hard to pronounce condition that affects the spine and is very painful, then I have done my job.

So, what is your style when you share your story?

Are you going to be funny and divert attention?

Are you going to be a source of information and knowledge?

Are you going to try to relate to your listener’s past experience?

And you don’t need to choose one style.

Practice multiple styles

I work in a school and kids can be very observant. They see I have trouble standing, sometimes limp, and park in a blue parking space. When I tell them about it, I don’t want to worry them. I am a little funny, but I'm also a teacher so I want to give them the basic details. 30 second story at the most. (If I'm talking to a student who is a fellow Spoonie, I might go longer and a little more detailed, after all, they are my kinda people.)

When I am talking to a coworker, I'm more likely to try to relate to them, especially if they are over 40. Hopefully they can understand a body that is falling apart, but I also want them to know I've been living this way since I was 12, and it is not age related.

Simply: know your audience, and adapt.

Craft your story

Now, there might come a time when you need to talk longer than 30 seconds.

If you get your name out there as a patient, you could get asked to do talks or interviews. Or, maybe, you’re at a dinner table, and someone actually wants to hear your whole story. In these cases, you might want to be ready with more information, and perhaps a little more showmanship.

I literally have written down all my stories, and have practiced them enough that I can adapt them for each audience. When I do media interviews, they always want to know about my diagnosis, my support group, and how I got to be where I am today. I like to have a few versions of each part in my holster just to keep things interesting.

I still can’t believe the entire medical world doesn’t already know my story, I’ve told it so much. But, I still want to make each telling a little different for the viewer or reader just in case.

The bottom line is, this is your story, and they asked you to tell it. You are the expert in the room, so make it your own. Whether it’s funny and entertaining, or emotional and medical, practice it, mold it, and be prepared to share it.

Do you have an axial spondyloarthritis story? Click the button below to share with our community!

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Community Poll

Have you taken our In America Survey yet?