Things I Took for Granted Before AS
Although I’ve only had AS for 3 years, it feels like a lifetime. Sometimes, I find it hard to remember what life was like before. Was there really a version of myself who lived pain- and medication-free? When I think about this past self — my pre-AS self — I am confronted with the fact that I used to take a lot of things for granted. I wasn’t aware that I would develop a chronic illness, nor was I anticipating the major life changes that would come with it. My ability was something that felt untouchable — I was young and healthy, of course — and something that I took for granted.
I learned that nothing is guaranteed
Developing AS taught me that nothing is guaranteed. One day, you could be running and jumping, and the next day you could find yourself in a hospital bed unable to move. I went from living my life with ease, to struggling to tie my shoes, get dressed, and walk. As a result, I now appreciate any and every movement that my body allows. I have learned that health and ability are fleeting, and that I was lucky to live without the limitations of pain before.
Here are some of the things I took for granted before AS:
One of life’s greatest pleasures is sleeping — whether it be lounging around, napping, or getting a good night’s rest. Unfortunately, AS can cause difficulty sleeping. Before AS, I fell asleep and stayed asleep without pain, didn’t choose my sleeping positions based on how much they would hurt, and woke up every morning without my first thought being, “ow.” I didn’t know what a luxury that was!
When I worked before AS, I had no limitations. I could stand for long periods of time which, sure, made my feet hurt, but did not cause the unbearable pain that it causes now. Back then, I had no idea how lucky I was to be able to work long shifts without accommodations. Now, I actually envy retail and fast food workers, not because their jobs are fun — but because they have the ability to work those jobs in the first place.
Working out seems like a chore to many people who have never lost the ability to do so. I used to be the same way — I saw exercise as something I had to do, rather than something I got to do. Then AS came along and every lunge and jumping jack sent piercing pain into my lower back. I have learned that exercising without pain is an immense privilege, so I take advantage of it and exercise as often as I can.
There are so many daily activities that I used to take for granted. For example, going to the mall used to be an easy, mindless Saturday outing — now even an hour of shopping can send me into a flare of pain and fatigue. Other activities that are painful with AS include showering, cooking, going to the movies, going to class, going on road trips, socializing, and the list goes on — I never appreciated my ability to participate in these activities until they became painful.
The last thing that I took for granted before AS was my freedom to choose anything for myself, without limitations, boundaries, and complications imposed by AS. While I don’t let AS completely dictate my life choices, I do have to keep it in mind when making any decision. I have to plan trips and outings around my AS, choose career options that might be able to accommodate AS, and build every relationship knowing that I will have to bring AS up eventually. I didn’t realize before that being able-bodied allowed me great freedom in this world built for the able-bodied.
Reflecting on what I took for granted
I often reflect on these things that I took for granted. When I feel pain first thing in the morning, I long for the body that didn’t. When I inject my biologic medication for AS, I imagine my old life where I had never held an auto-injector. But it doesn’t make me feel sad — it makes me feel grateful. I feel lucky to have gained this insight and appreciation for life since developing AS. I don’t blame my past self, or anyone else who takes these things for granted, for being unaware.
But I do hope that anyone reading this takes a moment to pause and appreciate everything they can do…if you are able to walk, sit, stand, sleep, eat, drive, work, exercise, or socialize without bodily limitations, you are luckier than you know. Gaining this perspective and realizing what we take for granted can increase our appreciation and gratitude for each day, while also leading to better empathy for disabled people.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?