How I Found Pride And Purpose In Ankylosing Spondylitis
I'm proud to have ankylosing spondylitis! You heard that right. I am proud to have an incurable chronic condition that makes every day of my life a painful disarray. Why? Because I wholeheartedly believe that ankylosing spondylitis has given my life a true purpose.
Pride from day one
I was diagnosed when I was 12 years old. I tell everyone I didn’t think much about it, and went back to playing video games.
This is partially true. From ages 12 to 22 I really didn't think much about it at all, and even forgot I had it for a few years. However, shortly after my diagnosis, I wore that 21 letter name tag with pride. I had something nobody else had. Ankylosing spondylitis! I couldn't pronounce it, but I thought it was pretty cool.
Again, this was 1994 and there weren't many treatment options for pre-teens, so there wasn't much I could do, and therefore not much reason to think about it. I remained active, played sports, climbed trees, and all of that. I didn’t get down about my AS, I chose to live with it with pride.
I'm here for support
In 2007 I started my first support group. At this time my AS had caught up with me and I was well aware of its presence. I still hadn't done much to treat it, but I did have one thing working in my favor. The desire to lead and support. As an educator, raising awareness, spreading information, and leading conversation was already in my blood. I figured, what would be better than starting a support group and creating a safe place for AS patients.
At this point, I didn't even know there were other AS patients. I’d never met anyone else, nor had I even heard it mentioned by anyone besides the doctor who diagnosed me and the doctor who reminded me I had it after I forgot. Please understand, I don’t write this next part to brag, but after a few years of running this support group, I had close to 10,000 members and the members started writing me saying my group was the best and thanking me for starting it.
Holy cow! I realized that this group wasn't just a way to give back, it was my purpose! It gave me pride, it gave me joy, and it gave me a good reason to spend hours on Facebook. Now, I run a few support groups online and in person. I couldn't do this if I didn’t have AS.
I’m an expert?
Once my groups started growing, I became more involved in the ankylosing spondylitis community, and I started making meaningful connections with other AS advocates, new opportunities started opening. Healthcare corporations, pharmaceutical companies, and nonprofits started asking me for my expert opinion.
Really? They want to hear what I think? I don't have a degree in medicine! I’m not a doctor! Really? Me?
These groups really want to hear from the people on the front lines. The patients. I’ve been involved in making decisions about billion-dollar corporations, hospitals, and local support systems can better interact with their clients. I take a lot of pride in doing this and it gives me a purpose in this AS life.
And, You Can Too!
So, what's the point in sharing all my life’s accomplishments? It’s not to brag. I wanted to share all of the above to inspire and empower. You too can be a patient leader! I’m not special (no matter what my mom says). I’m an ankylosing spondylitis patient, just like you.
Just having the disease already makes you more of an expert than most doctors. You can learn everything in the world about AS in med school, but until you actually know what it's like to wake up in pain, struggle to walk, forget your own name, and collapse in bed at 5:30 (but not fall asleep until 3). You don’t know anything.
We need you!
The world needs more advocates, leaders, and experts supporting, educating, and fighting. You can do it! No, seriously, you can!
You might say I’m counting my blessings, and I am. I am blessed to have all of these opportunities that I wouldn't have if I was never diagnosed.
I have pride. And, I have purpose.
Do you use the word disability to describe your AS?