Where Do I Start? How to Share Your Ankylosing Spondylitis Story
"I want to share my story but don't know how to start."
If this sounds like you, you're not alone. I've heard people say this quite often in the AS community. Getting started can be the hardest part. Especially if this is the first time you've ever shared your story.
Sharing can be scary at first
After spending time and energy trying to get a diagnosis, it can be tiring to think about sharing all of a sudden. You might wonder how others will respond, or if they will respond at all. Or worried that nobody wants to hear what you have to say.
I can assure you that isn't true. I read every story that gets submitted to AnkylosingSpondylitis.net. Each and every story has a tremendous impact, and helps raise awareness for the challenges of living with AS. You never know who will read your story, and how they might be able to relate.
After finally taking the leap, many people will say that they can't believe they waited so long to share their story. Some will even say that sharing their AS story is one of the best things they've ever done.
Ready to share?
I've gathered the components that make up many AS stories and outlined some pointers to walk you through sharing your story. While there isn't a single format or structure for a story, I hope these help you with sharing yours, whenever you are ready of course. Let's get started!
Start with a short introduction about yourself. Remember your audience does not know who you are, so include relevant aspects about your background or interests. How long have you been living with AS symptoms? How long did it take you to get diagnosed? How many healthcare providers did you need to see?
Your symptoms and treatment
Many people will open up about their symptoms, and what they've been doing or trying to manage them. They talk about their visits to the doctors, and what they are learning about their condition. How many tests have you undergone? What treatments, if any, are you using and how has that been going?
How you are doing today
The end portion of the story usually includes a reflection or an update on how they are doing. Have you made any progress since the beginning of your journey, or have things gotten worse? What mental hurdles are you facing? Have you found support online or in-person? What are your hopes or plans for managing your AS?
Don't forget to make it personal
No two stories are the same. Be sure to incorporate some personal touches to make your story unique to you. Whether it's your raw emotions, sense of humor, or writing your story like a poem or song, your story can be as unique as you are.
Share you AS story at AnkylosingSpondylitis.net!
I look forward to reading your story!
-Anthony (AnkylosingSpondylitis.net Team Member)
Other than back pain and fatigue, what is the most common symptom that AS patients experience?