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Living With Untreated NrAxSpa

Tiffany Westrich-Robertson discusses the day-to-day difficulties and inhibitions of living with nonradiographic axial spondyloarthritis (NrAxSpa) prior to treatment of certolizumab pegol.

Tiffany Westrich-Robertson: In the very beginning when onset happened, and before I was diagnosed, before I had treatment, and this happens to a lot of patients, I went through this, “Who am I now” phenomenon, because the person, the Tiffany that I knew, didn’t exist anymore. I was very athletic, and I did kickboxing. I was playing softball and volleyball, and I swear I throw the best football of any female you’ve ever seen in your life. I should have been a quarterback. And I was known for that. And suddenly I couldn’t do any of those. I couldn’t socialize to the extent that I had prior because of the fatigue and the energy levels. My background was in business development. So I was used to taking clients to dinner or attending networking events. Couldn’t do that anymore. Literally, who was I?
Things like driving. I specifically remember not being able to sit on the seat because my tailbone area had hurt so bad. I was driving down the road tilting, out the window driving, because I couldn’t sit down. Not being able to do both wash and dry and fold laundry, that’s too much.

So I became a professional at time management. So it changed my life not only for who I was and my kind of an identity crisis, but I had to really work on what I was capable of doing, because if I did too much in 1 day, I couldn’t do anything else the next day. So fine-tuning that and then starting to realize you’re just constantly, it’s a different way of living. And you’re not used to that, especially in your mid-30s. You don’t think that I’m going to not be able to play sports or sign up for the company’s softball team. You don’t think that. And then you look fine and so people, it’s invisible, and so people will think you’re stuck up, unsocial. You know, “Why would she want to sit on the sidelines?” And you know, if you don’t want to explain it to anybody… Those kind of things were, that’s what my life was like prior to treatment. It was really an identity crisis and struggle.

Work, in particular, that was interesting. At the time I worked in business development like I had mentioned, worked in business development, so I would do a lot with taking clients out. And I also taught college. And I never lectured. Everything I did was extremely high energy, hands-on, interactive teaching. I was a public speaker. And so all of those things require energy, require a lot of high energy. But also I had, for teaching and public speaking, I would have to carry things. That became extremely difficult.

I got to the point where I just wanted to teach in college because I could dominate the schedule a little better. I definitely couldn’t do any type of marketing, business development, because I couldn’t do the long hours. At the time I remember thinking, “Oh my gosh. I have all of these skills that I’ve developed. I’m going to have to go back to school and have another career, because I can’t do any of this anymore. And that was a, that was a really difficult time. I needed to find something that was flexible. And I ended up toggling all of my skills into developing a nonprofit, so I could work from home. But at the time, you know, not everybody has that opportunity or everybody has that situation. So that greatly affected work.
 
 
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