Being Perceived by Others
Going from seemingly normal to having a chronic illness in a short time frame is a difficult adjustment. I had a tough time dealing with how I felt I was perceived by others, especially my coworkers. I started my job before I started having any symptoms and then suddenly, I started having intense pain. I thought I had a workout-related injury, so that’s what I told people at work when they asked why I was limping. Telling people I was injured was easy because it meant that everything was temporary and I would be back to my old self soon. I didn’t feel I was perceived any differently.
My pain did go away with physical therapy, solidifying to myself and others that it was indeed an injury and nothing more. I was pain-free for a few months, but right at the start of the pandemic, my pain came back while I was working from home. Soon after this second round of pain, I was diagnosed with non-radiographic axial spondyloarthritis.
I told my coworkers, but they couldn't fully see me
I told my coworkers over a video conference that my pain was back and that it wasn’t an injury, but a chronic illness. They asked some questions and were supportive, but since we didn’t see each other much working from home, they weren’t able to see what living with a chronic pain condition really meant.
They could not see my stiffness, how I had a tough time getting up out of a chair, or my fatigue-induced afternoon naps. My coworkers could not perceive me differently because they could not fully see me over video conference. But this was soon about to change.
When they saw me in, person they noticed
As the pandemic was getting somewhat under control, my coworkers had a socially distant get-together. This was the first time in a while we had all been together and it took place on a day where I was feeling particularly stiff. At this party, there were games like ping-pong, darts and Wii tennis. There were also kids with hula-hoops and “skip-its”.
I tried playing ping-pong, but the twisting movements were difficult, and I could barely bend down to pick up the ball from the ground. I let out a grunt every time. Eventually, my coworker offered to fetch the ball since she could see I was having trouble. Later on, I was asked to hula-hoop and play with the skip-it by one of the kids. I had to tell her that I couldn’t, and my coworker interjected that I had hurt my back.
I could hear them pitying me
After the hula-hoop question, I suddenly realized that other people were seeing my limitations. For the first time, my coworkers were seeing me not as someone with a temporary injury, but someone with a chronic illness. I felt like they were perceiving me differently because I couldn’t get that ping-pong ball and I couldn’t hula-hoop. They now had a glimpse into my new life – the pain, the sadness, the hopelessness. It was like I could hear them pitying me and I could see them understanding that this wasn’t temporary – it was permanent. I grew more and more upset as the party went on and eventually, I felt like I couldn’t hold back the tears any longer. I said my goodbyes and cried the whole way home.
For days after that party, I felt isolated, alone, and different. I didn’t want others to perceive me as different, see me in pain, or pity me. I wished I had been able to hide my pain and stiffness from them, but that’s something I and all of us spondy folks must learn to cope with – being perceived differently because of a chronic illness.
Does reading AxSpA patient stories help you in your journey?