Welcome to our virtual community! Start by browsing through the personal stories featured here.
We have organized these stories into two categories: Your Stories -- stories sent to us at the Spondylitis Association of America -- and selections from The Faces of Ankylosing Spondylitis project.
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By Richard Howard
20 years ago, I was out of medical options for my ankylosing spondylitis. It was before the biologics came out and I had life threatening consequences to the existing medicines. I needed a new plan.
At my bride’s prompting, I reluctantly went into Lee Lones’ 7:30pm yoga class at my gym. I went to the back corner of the already dark studio. I hated it. I loved hard, fast paced sports. I was still grieving over being told not to run or play rugby ever again.
Lying on the mat, I was reminded how inflexible I was with every stretch. Instead of spending 24 hours a day trying to make the disease invisible to me as well as the rest of the world, I was being forced to examine every detail of limitation. What a nightmare...But what a blessing.
Over the years, I’ve learned to modify any pose so that no matter how bad I feel before yoga, I’m always improved walking out. I still have reduced range of motion, but that’s not the point. Exploring the edges is the point and “spondys” have the advantage because the boundaries are easy to find.
I’m more flexible on so many levels. My practice positively influences my stress level, sleep, breath, diet, strength, attitude and relationships. Yoga has been my “weekly injection” ever since that first class and I never skip a dose.
I went through teacher training so that I could help modify a yoga practice for my “spondy-friends” with different physical challenges. Now, when someone with spondyloarthritis asks me a yoga question, I can offer them a free private yoga class. “Come to the support group meeting next month and I’ll give you private yoga instruction before or after the meeting. I won’t charge, just make a donation –of any amount– to the SAA.”
Like yoga, the SAA makes spondylitis visible. Once a month, for two hours, I’m in the room with people that “get it”. There is so much experience in the room. When someone asks a question, chances are at least four people in the room have experience with that same issue. “Who here has had severe fatigue?” Every hand went up. For a couple of hours you feel normal. You feel empowered by the tips people offer. Walking back to my car after a meeting, one person said, “I got more information about spondylitis in an hour of that meeting than in all my doctor appointments put together, and I have had a lot of doctor appointments!”
Our group likes to have speakers, we have had 11 speakers in the past 22 meetings, everything from rheumatologists, psychologists, eastern medicine practitioners, insurance professionals, workers comp experts, researchers, yoga instructors, etc. After a meeting, one renowned rheumatologist told me that these meetings are more valuable than a doctor’s appointment. Like yoga, knowledge and modification has been the cornerstone to my managing spondylitis.
In yoga terminology, the support group is a ‘Kula’ (coollah), which means, “a community you participate in with likeminded individuals.” Some people attend regularly, some sporadically when there is an interesting speaker or when they are going through a particularly tough time. Some people come once, and I think they just need to see and hear what it’s like to live with spondylitis for 5 years, 10, 20… decades. We have all ages, ethnicities, severity and duration of spondylitis. No two people are experiencing spondylitis exactly alike. But, by the heads nodding during the meetings, it’s clear we all speak the same language. This is something you can’t get anywhere else.
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