2025 Guide: 5 Common Ankylosing Spondylitis Misconceptions That Need to Stop

There was a time when I had no idea what ankylosing spondylitis (AS) was. Then, I thought I understood it, but only now do I truly grasp what AS is—and equally important—what it is not.

My journey has transformed not only my knowledge of the disease and its management but also how I communicate about it with others. Many who live with AS will recognize this evolution.

Raising awareness about this complex, often hard-to-diagnose condition is vital. Yet, when pain intensifies, discussing AS repeatedly can be exhausting. Hearing the same questions and comments, even from different people, wears on us.

Here are five statements about AS that I’m genuinely tired of hearing:

1. "How’s your back today?"

Rarely is my back truly "good." Asking reminds me of the ongoing discomfort. AS affects more than just the back; it’s systemic. Pain may strike my sacroiliac joints, hips, ribs, knees, feet, or even my eyes (hello, iritis!). So, even if my back feels okay, the pain might be elsewhere.

2. "Fatigue? I get tired too sometimes."

There’s a big difference between being tired and experiencing fatigue. Tiredness can be remedied with rest, but AS-related fatigue persists despite sleep. Even after eight hours of rest, I may wake feeling drained because my immune system remains active, making life challenging. Coffee doesn’t fix this—but if you’re offering, I’ll gladly accept!

3. "You’ve been fine all day; why do you need to sit now?"

Because I pushed myself too hard again. On days when I feel almost normal, I want to seize the moment and enjoy life. But overexertion leads to fatigue and pain that demand rest. This cycle is frustrating but part of living with AS.

4. "Have you tried... ?"

Yes, I have. And no, it didn’t help. After years of managing AS, I’ve explored every safe option to find relief. What works for others, like chiropractic care, might be contraindicated for AS patients. I appreciate your concern, but please trust that my healthcare team and I are doing our best without resorting to unproven remedies.

5. "You don’t look like you’re in pain."

While likely meant as a compliment, this can feel dismissive. Chronic pain often becomes invisible because we learn to mask it. Sometimes, I need to appear "normal" just to cope with the internal struggle. Please understand that pain isn’t always visible.

Key Takeaway

It’s natural to feel frustrated by repetitive questions and comments about AS. However, most come from a place of care and curiosity. Our role is to educate with patience and empathy, helping others understand what living with AS truly means. Remember, everyone once started without knowledge about this condition.

Is there a misconception about ankylosing spondylitis that you’re tired of hearing? Share your thoughts in the comments, and let’s start a meaningful conversation.

Ricky White was diagnosed with AS in 2010 while working as a registered nurse. He co-founded Walk AS One, a nonprofit dedicated to global AS awareness. Nowadays, he balances life as a stay-at-home dad, writer, martial artist, and bonsai enthusiast. His book, “Taking Charge: Making Your Healthcare Appointments Work for You,” is available online and at bookstores.

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