What’s the Reaction You Normally Get When You Share You Have AS?

Telling your friends and family about an ankylosing spondylitis diagnosis can be difficult—especially if they’ve never heard of it before. Hillary Wool of Brooklyn, NY, describes the way she talks about the disease, to help others better understand what she’s going through.

You might see me looking different or needing to do things a little bit differently day to day, my key messages for them are more like, I've got it and it's fine.

Interviewer: What's the Reaction You Normally get From People When You Share You Have AS?

I tend to first tell them that I have an autoimmune spinal condition, or I have this hip condition that kind of goes in and out. I usually will reserve sharing the specific diagnoses that I have for people that I'm closer with. I mean, I talk about them on social media, you know, hashtags, mentioning with people that I work with and people that I interact with more casually.

My key messages for them are more like, you might see me looking different or needing to do things a little bit differently day to day. But like, I've got it and it's fine, and I will communicate with you around, hey, there might be sometimes where I need to shift things because of an appointment or because of a flare up.

I just want to be able to have that conversation openly. I think it is also just important to put that out there, so people have heard of it. I think in the context of AS, it has a reputation for being, for whatever reason, a man's disease, and I think it's important to counter some of those stereotypes.