10 Things Never to Say to Someone with Ankylosing Spondylitis

Ankylosing spondylitis (AS) is a type of arthritis. Because it’s much less common than osteoarthritis (OA) or rheumatoid arthritis (RA), people who have it end up answering a lot of basic questions — like “You have what?” and, “What’s that?”

When you encounter a friend, co-worker, or family member with a condition you know little to nothing about, it’s hard to know what to say. Making an uninformed comment, no matter how well-intentioned, could wind up annoying or even hurting them.

Here’s a guide to help you make more informed choices when you talk to someone with AS.

1. You have what?

Nothing can invalidate your friend’s pain more than acting like their disease is odd or made up. That may happen to people with AS more often than not, given that just .2 percent to .5 percent of people in the United States have the condition.

Take a few minutes to read about AS on your smartphone before you blurt out, “What the heck is that?” If you don’t have time to learn about the disease, at least ask about it in a more considerate way. “I’m not familiar with your condition. Can you tell me more about it, and how it makes you feel?”

2. You don’t look sick!

Some diseases have apparent symptoms; AS isn’t one of them. Pain, stiffness, and fatigue are invisible to all but the sufferer.

Though you can’t see the pain, trust the person with AS — it’s there. And that pain can be debilitating enough to prevent them from hanging out with you or doing a lot of other things they enjoy. So when they tell you they’re sore, or stiff, or tired, try to be sympathetic.

3. Arthritis? That’s what my grandmother has!

AS is a form of arthritis, but it’s not your grandmother’s arthritis. OA is the kind you get as you age and the cushioning shock absorbers between your joints gradually wear down. AS is an autoimmune disease, meaning your immune system attacks your body. It’s likely related to genes. It can start at any age — even in childhood.

And unlike OA, AS goes beyond the joints. It also can cause problems with other body systems — like eye inflammation and heart problems.

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