The Progression of Nr-AxSpA Symptoms

Tiffany Westrich-Robertson: When the axial symptoms first started, I mean…really started to present themselves strongly, I made the mistake of thinking maybe I had thrown my back out. Because that happens with these diseases. Because that happens with these diseases. They feel like injuries. Every time a new place, inflammation starts, it feels like an injury, so you do sort of second guess yourself. I put a brace on, and that was the worst thing I could have done. Any type of immobility will make it worse.

And I remember being at work and starting to cry because I literally felt like my spine was going to shatter. And I took the brace off, had to walk—tried to walk around for a little bit—and that’s when I realized some of my limitations as far as not being able to make it to work on time because it was so hard to get out of bed. I started feeling like I’m not as dependable as other workers. I know I am, but there’s kind of that cross with the psychology of it.

And then socially, and even still today, I have to always worry about if there’s seating where I’m going. Like if I want to go to a concert, I can’t go and stand, I have to make sure I pay for the seats. I remember being on a trip with my female friends, and this was a few years back, and we were all dressed up and we were looking good, right? We were all dressed up in our best, and it was like a bachelorette party.

So we were all out, and it was a club. And they didn’t have any seats, but they had a couple of couches. And they were, you know, in the VIP section. But the edges of the couches were behind the rope, so they weren’t technically in the VIP. And I leaned back on it because I needed to get the pressure off my lower back, and a bouncer comes over and tells me to move. And I said, “I just need to rest here for a minute.” And he said, “I’m sorry, you have to move.” And I said, “I have a disability, and I just need to rest here for a minute.” And he said, “I don’t see a wheelchair, so get up.” So those are the kinds of things that you have to deal with all the time.

Even now, even though I am on treatment, I still always have to deal with some things. But before the treatment, I constantly had to manipulate what I could do, what I couldn’t do, what I could attend, what I couldn’t attend. It was definitely a lot worse before starting treatment. There’s no doubt.