I recently wrote a narrative about my relationship with the Spondylitis Association of America for #MyGivingStory, a campaign that focuses on people’s relationships with giving to nonprofits. The story I submitted was not a finalist, but I believe it deserves a life beyond that campaign.
I still remember calling the Spondylitis Association of America (SAA), declaring, “I’m going to be a poster child for Ankylosing Spondylitis (AS).” I had just been diagnosed with AS – a severe, painful inflammatory disease that mainly affects the spine/low back and can cause bone spurs to fuse joints together, typically in the spine.
As you can imagine extra bone growing in your body that’s not supposed to be there can be quite painful.
Additionally, since AS is systemic it can also damage organs including the eyes, liver, lungs, and more. Over 2.7 million people have Spondyloarthritis (the type of disease AS is) in the United States – that’s more than twice the number of people who have Rheumatoid Arthritis. It’s also more than the number of people who have Lou Gherig’s disease (ALS) and Multiple Sclerosis (MS) combined. AS isn’t rare, but it often feels that way.
I was angry. So I became determined to use my physical strength and my pretty face to raise awareness of an ugly disease – I declared I was going to backpack across the country, give speeches, raise money, find a cure, and make Ankylosing Spondylitis a household name.
These were words I said in my state of shock after inheriting this incurable disease from my father. I didn’t honestly expect any of these promises to come true. I felt helpless. I knew my life was over.
My disease isn’t rare, but people had never heard of it. Funding was needed for research but I was just trying to survive day-to-day. I was forced into poverty because I spent everything I had managed to save on a new health insurance plan. I hated that I couldn’t donate money at the same time that I hated I needed help getting out of bed (I was 27).
But I’ve always been innovative, and I quickly learned I could make a louder impact by showing people what it was like for me to live with this horrendous disease. If I could do anything, I could at least demonstrate what this disease had done to a former college athlete who could overcome anything.
I discovered that my advocacy – raising awareness and putting a face to the disease – gave others permission to open up with me about their own life struggles.
In sharing my pain, fear, and anger, I unintentionally created a platform for others to feel safe being vulnerable. I had found my calling: trick people into being vulnerable with me, and then ask them to give money. Just kidding!
Really, though, I realized that getting people on my side gave me a unique advantage. They listened to me, respected me, and then it was easy for them to believe me when I began sharing the gap in funding for AS research. It was an easy sell when I began encouraging people to donate to the SAA.
I have no idea how many people have given money to the SAA because I have asked them to, and I really have no desire to know.
Giving back is more than about giving money. It’s about doing something public to motivate more people to support the cause both financially and vocally.
I am permanently disabled, so I do not have expendable income. But I decided early on that I wanted to be part of making Ankylosing Spondylitis a household name.
We obviously still have a long way to go before that happens, but in the nearly 5 years since my diagnosis, guess what happened? I have given speeches, written articles, raised a bunch of money, and traveled the country (not by backpack, as I declared early on) as an advocate in partnership with the Spondylitis Association of America. And I’ve noticed a lot more people have heard of AS now. And I can’t stop, won’t stop, until AS is a household name.
The Spondylitis Association of America remains my most trusted source for up-to-date information about AS and Spondyloarthritis information. SAA sponsors patient-led support groups for people with AS and related diseases; engages with numerous national and international nonprofits, corporations, pharmaceutical companies, and federally-funded organizations; and produces educational material and hosts online forums for patient-moderated support.
What baffles me is that they do all this amazing work with a super small staff – that’s the kind of amazing national nonprofit I think everyone can get behind.
The Spondylitis Association of America did not ask me to write this blog post or compensate me for doing so.