The Progressive Disease

“It’s going to get progressively worse,” the doctor informed me. I smiled and nodded my head as I responded, “I know.”

But I didn’t actually know. The past few years have been relatively “easy” in comparison to my adolescent years. As the major health complications decreased, I became increasingly convinced that life would progressively “normalize.” I assumed the major bumps in the road were actually behind me. I even looked forward to “normalcy.” Then my current bump in the road reminded me that this is normal — my “normal.”

Most people assume enduring physical pain is toughest part of a prolonged health complication. Although my right arm throbs day and night, the pain isn’t the toughest issue to cope with. What’s toughest for me is having to remember that this is my “normal.” My path has always been bumpy.

I’ve known people who have made the mistake of thinking, “She’s had this syndrome her entire life. She should be used to all of this.” Even though I’m used to encountering bumps in the road, I still feel each and every bump. They still hurt. They still hinder my plans. They still disrupt smooth seasons of life. I may be used to encountering bumps in the road, but I can’t get used to feeling them.

My advice: don’t assume health complications become easier to endure over time. Someone with a disease/disability not only endures the physical symptoms associated with a bump in the road, but they also have to readjust to a different lifestyle as they go over the bump. Right now, I talk to doctors more than I talk to friends. I had to put my planned writing projects on hold. I couldn’t go to the Boston Harbor, so I visited a small lake near my house. As I’m readjusting to my “normal” way of life, I’m reminded that we should never assume readjusting is easy and instantaneous.

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