There was once a time when I didn’t know what ankylosing spondylitis (AS) was. Then there was the time I thought I knew what it was. And then there is now: the time when I know what AS is, and more importantly, what it isn’t.

What changed in that time isn’t just my understanding of the disease and how to manage it, but also the way I talk to others when I talk about my disease and its associated conditions. I’m pretty sure you’ve been through the same process too.

We love to help raise awareness for this disease that affects so many, but that can be challenging to diagnose. Then sometimes — usually when we’re in significant pain — we don’t want to talk about it. We shy away from discourse because we don’t want to answer the same questions over and over, and we’re tired of hearing the same words spoken, even if a different person speaks them.

Here are a few of those things that I’m tired of hearing about AS:

1. How’s your back today?

Well, it’s pretty much never good. And now you’ve just reminded me of that by asking. It’s also never just my back either. AS can be systemic: Sometimes my back is fine, but I have pain in my sacroiliac joints (SIJs), my hip, ribs, knees, the bottom of my feet, or worse, my eyes. (Hello iritis!) Maybe today my “back” is OK, but that doesn’t mean I’m not in pain.

2. Fatigue? Yeah, I used to get tired a lot too.

Nope. Sorry, but being tired isn’t the same thing as and being fatigued. I don’t care if the dictionary says they are synonyms.

When you get tired, you can sleep and not be tired anymore. When I sleep for eight hours, I can wake up feeling like I haven’t slept at all. My AS doesn’t switch off at night, and my immune system is busy working away trying to make my life as challenging as possible. All the coffee in the world doesn’t help either. But if you’re buying, I’ll take one anyway.

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

Because I’ve gone and overdone it, again. You would have thought I’d have learned my lesson by now, but on those days when I feel almost “normal,” I want to make the most of it! Besides, getting out and doing normal people stuff is good for my soul. But now I must pay the price and rest because my old friend fatigue has come to visit, and he bought his friend pain too.

4. Have you tried… ?

Yes, I have. And no, it didn’t work. When you’ve been in pain for as many years as I have (or longer), then you’ve tried everything legal just to get some relief. Your chiropractor might be amazing for you, but it’s a contraindication — that is, inadvisable — for people with AS. I’ve tried every diet change and supplement available already too. Thank you for trying to help, it’s kind of you, but please don’t insult my intelligence, or my team of doctors, by insisting I try your magic beans.

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

You’re probably trying to compliment me. I get it. But often it feels like you’re insinuating I’m lying about my pain levels. When you’re in pain every single day, you get used to not showing it. Sometimes I just want to look in the mirror and not be reminded of the turmoil and torture inside. Occasionally, I just need to pretend to be “normal” so I can cope.

The takeaway

It’s easy to get frustrated and annoyed by the suggestions, comments, and questions we encounter daily. If we truly want to raise awareness for AS, then we need to respond to everyone with openness and compassion. Rarely are these comments coming from a place of spite; people do want to help. We’re responsible for educating them and helping them understand what it means to be a person living with AS. Next time someone says one of the above, remember: There was a time you didn’t know what ankylosing spondylitis was either.

Is there something you’re tired of hearing about ankylosing spondylitis that isn’t on the list above? Let me know in the comments, and let’s talk about them together.

Ricky White was diagnosed with AS in 2010 while working as a registered nurse. He is a founding member and the vice chairperson of Walk AS One, a 501(c)(3) nonprofit aimed to raise the global awareness of AS. By day he is a stay-at-home father of two; by night he is a writer, martial artist, and bonsai addict. You can find his book — “Taking Charge: Making Your Healthcare Appointments Work for You” — by going online or enquiring at your local bookstore.