Chronic Illness: Living With Pride, And Having Purpose
Part 1 of 2 I am incredibly proud to have Ankylosing Spondylitis!
You heard it right. I am proud to embrace this lifelong chronic condition that brings pain and challenges into my everyday life.
But why, you may wonder?
Because, with all my heart, I genuinely believe that Ankylosing Spondylitis has given my life a profound purpose.
From the very beginning, I wore my diagnosis with pride. I was only twelve years old when I was diagnosed, and while at first, it didn’t take up much space in my mind, it soon became a defining part of who I am. Ankylosing Spondylitis became my unique identifier, something that set me apart from others. I may not have been able to pronounce it correctly, but boy, did I think it sounded pretty cool.
Granted, in the mid-90s, treatment options for pre-teens were limited, so I didn’t dwell on it too much. I remained active, played sports, and climbed trees like any other kid my age. I didn’t let my AS bring me down; instead, I chose to live with it proudly.
In 2007, a pivotal moment arrived. I established my first support group, realizing the impact and presence of my AS. While I hadn’t pursued much treatment for it at that point, I possessed a strong desire to support and lead. Education was already a part of my life, and I felt that spreading awareness, sharing information, and fostering conversations would be the perfect way to create a safe haven for fellow AS patients.
It amazed me how isolated I had felt in my condition until that point. I had never met another person living with AS, nor had I heard it mentioned by anyone besides my diagnosing doctor and the one who reminded me of my condition when I had temporarily forgotten. But through my support group, I discovered a vibrant community of individuals facing similar challenges. And incredible things began to happen.
I do not say the following to boast, but rather to emphasize the impact this group had on my life: within a few years, my support group had amassed close to 10,000 members. (Today, it is home to 45,000 members) The group members themselves reached out to me, expressing gratitude and declaring that this was the best support group they had ever encountered.
In that moment, I realized that this support group was not solely a means to give back; it had become my true purpose. It bestowed upon me a sense of pride and fulfillment that I had never experienced before. Spending hours on Facebook was no longer just a pastime; it became a meaningful way to connect and support others facing the challenges of AS.
Today, I manage several support groups both online and in person. It is a role I would not be able to fulfill if I didn’t have AS in my life.
As my groups continued to grow, I found myself becoming more involved in the Ankylosing Spondylitis community. Meaningful connections with fellow AS advocates surfaced, and with them came new and incredible opportunities.
Healthcare corporations, pharmaceutical companies, and nonprofits started seeking my expert opinion. Can you believe it? Me, someone who lacks a medical degree or the title of doctor. But yes, I was being sought after for my thoughts and insights.
Why? Because these organizations genuinely value hearing from people on the front lines, from the patients themselves. With my involvement, I have had a hand in making decisions about billion-dollar corporations, hospitals, and local support systems. Together, we have worked to improve the way these entities interact with their clients.
So, you see, I may have Ankylosing Spondylitis, an incurable chronic condition that brings pain and dismay. But I proudly embrace it for the purpose it has given me, the support I am able to provide, and the opportunities to make a difference in the lives of countless others.
And, You Can Too!
What’s the purpose behind sharing all my life’s accomplishments?
It’s not about boasting.
I wanted to share everything mentioned above to offer inspiration and empowerment.
You also have the ability to become a patient leader!
I’m not exceptional. (Despite what my mother may say)
I’m an Ankylosing Spondylitis patient, just like you.
The fact that you have the disease makes you more knowledgeable than most doctors. They may learn everything about AS in medical school, but until they experience the pain of waking up, struggling to walk, forgetting their own name, and collapsing in bed at 5:30 (only to fall asleep at 3), they truly don’t understand.
The world requires more advocates, leaders, and experts who support, educate, and fight.
You have the capability! No, really, you do!
One might consider this counting my bl