The Importance of Meeting Other People with Ankylosing Spondylitis

I rarely meet anyone with ankylosing spondylitis (AS), and I almost never meet someone who knows what it is or how to pronounce it. So when I do, it feels extra special.

I recently spoke in person with someone who had written a piece about their experience with AS and who had read my work. There is an instant and comforting connection that occurs when we share our experiences. When that person noticed, by the way I was moving, that my back was hurting, it was magical.

I also met a physical therapist the other day who has made a series of videos about ankylosing spondylitis. To have her ask how I was feeling after we discussed my diagnosis made me feel seen. She knew what the disease is, how it affects the body, and how I’m able to move (or not).

Living with any chronic illness or rare disease sometimes means feeling invisible, especially when the disability or disease doesn’t show itself. It’s impossible for me to show how my back feels on a crowded subway, but in those moments, I feel like the Tin Man.

So when someone sees you and gets it, it makes all the difference. Talking with these people felt as if the barrier between the world and me had opened a bit. Because I spend so much time silently in conversation with my AS, it’s almost surreal to be able to speak it aloud with someone else.

I am grateful for the opportunity to write about AS and to meet so many wonderful people in online communities, but meeting someone in person is powerful. Your eyes tell a story that only the two of you understand.

If you would like to connect with people with ankylosing spondylitis, I recommend trying the following:

• Go to a meetup: I attend group meetups in New York City when I can. They are refreshing and beyond helpful. Not only do I get to connect with people who get it, I also learn more about their journey and how they manage their symptoms. I bring my partner, who learns how better to support me. Check with the Spondylitis Association of America for in-person meetings and message boards.
• Join a supportive Facebook community: I’ve learned that some groups on Facebook are more helpful than others. I gravitate toward those with focused topics and active moderators who help the community talk, share, and understand one another.
• Follow stories on Instagram: There are plenty of people sharing experiences, disease management stories, and healthy lifestyle tips under hashtags such as #ankylosingspondylitis, #ankylosingspondylitiswarrior, and #aswarrior. I’ve met many great supporters there, and I recommend tapping into the community.

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Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.