Reflecting on my First Year with a nr-AxSpA Diagnosis

January 2021 marks one year since my diagnosis of non-radiographic axial spondyloarthritis, or my first AxSpAversary if you will.

I can confidently say between a pandemic and a newly diagnosed chronic illness, 2020 has been the worst year of my life so far. It felt like it would never end, but we made it to the end.

So rather than dwelling on the past, I choose to look to the future and focus on a few themes from my first year of knowingly living with AxSpA which I can learn from and build on moving forward.

Confusion

This theme is twofold.

Firstly, it represents the unknowns of the disease. Before my diagnosis it was, why am I hurting so badly all the time?

Upon diagnosis that shifted to: what the heck am I living with? My mom was diagnosed with ankylosing spondylitis a few years before my diagnosis, so I knew a lot already about AS, but a slightly different diagnosis of nr-AxSpA brought a new learning curve for me.

Secondly, it represents learning to manage living with AxSpA. Everything is trial and error, and boy oh boy this year was filled with mostly errors. From finding the right medication for me to changing my eating habits, adapting sleep habits, alternating work habits, and finding new ways to exercise, it is an ongoing personal lesson.

One year later, it feels like an improved understanding of what’s going on with much remaining to figure out.

Patience

Patience is not my forte, but I got a lot of practice in 2020 courtesy of my body attacking itself.

I was relatively lucky. From my first doctor visit, through a diagnosis, to finding a medication that appears to be working only took about 22 months, which is fast compared to the decades I’ve heard from others’ experiences.

With that said, I spent a good six months of this past year relegated to my couch or bed waiting for the ability to function with normalcy again.

This is how I summarize my trials and tribulations with medications this year: wait, wait some more, a different wait, bureaucratic waiting, more waiting with a side of I really hope this one works.

At a time, it really affected my mental health. I felt useless and worthless, but eventually, I developed these two strategies to help pass the time:

• Adopt a day-by-day approach. From the time I wake up to the time I go to bed, find a way to make the hours pass by because tomorrow is one day closer to this all being over. This approach eventually got me to the end of the year.
• I need distractions. Most of my prior self-care activities were impossible to do thanks to the pain I was experiencing. I started baking sourdough, I started playing video games, going for short walks, doing short chores, making meals. Anything that would temporarily take my mind off of all my pain I was willing to try.

No matter how many times it felt like there was no end in sight, I promise you I eventually found the exit. I’m back to living my life and have reintegrated many of the activities I mentioned that felt impossible just a few months ago.

Acceptance of life with non-radiographic axial spondyloarthritis

My mental health vastly improved by wrapping my head around two ideas.

I will live with this for the rest of my life.

Some days are just going to suck.

I have changed two main approaches I’ve had in my daily life.

Every day I am going to do my best. I used to see that as needing to always perform at my best ability. Now, it is to give the maximum effort I can on a given day. Some days that won’t amount to very much, but I can be content knowing I did the best I could.

Also, I’ve always been an avid procrastinator and AxSpA might be the thing that snaps me out of it. No longer can I wait until the last minute to get things done. I have to get things done when I’m feeling well enough to.

Lastly, thank you to everyone who is a part of the AxialSpondyloarthritis.net community. My activity has dwindled through the last part of 2020 as I navigate new challenges in life, but I get periodic messages and comments that really help push me through tough moments. Nobody’s experience is like mine, just as my experience is like no one else’s but I’m glad we can all relate to some aspect of what one another is going through and provide supports here.

Also, thank you to Health Union for providing this community and bringing me on board as an advocate and to the wonderful staff that keeps this forum running as well as it does.