Why I No Longer Believe I'm Being 'Strong' By Hiding My Disabling Conditions

When I was 5 years old, my throat hurt. So did my head. I felt miserable, but I didn’t tell anyone. Not long after, my leg began to hurt. I still didn’t tell anyone. I walked the two blocks to my kindergarten each day, pretending I was fine. One morning, my body decided not to tolerate this stoicism anymore, and I collapsed on the sidewalk in front of my school. An eighth grade teacher saw me fall from his classroom window, ran outside, picked me up, carried me into the building, and wouldn’t leave my side until I was taken away in an ambulance. At the hospital, my terrified parents were stunned to discover that I’d been living with untreated strep throat, which cause rheumatic fever. As a result, I have to deal with damage to my heart every day for the rest of my life. Why? Because I refused to tell anyone when I was sick and miserable.

Eleven years later, I was badly injured in an auto accident. When a physician told me my left arm needed to be amputated, I nodded and said, “Don’t scare my parents. Let them know it’s OK.” The physician looked at me with horror and refused to reassure my parents. He insisted on showing them my injuries and explaining how serious they were. My mother began to cry, and my father fainted. I didn’t want anyone to know how badly I was hurt.

After this auto accident, I endured too many major surgeries to remember. I endured gangrene. I endured painful physical therapy. I endured debridement three times per day for nine days, and that’s an agony that I cannot describe. I never cried, not once, but I could not stop myself from screaming. My mother cried more, and my father fainted again. What I did not endure was amputation, because the physician who’d claimed it was the only option simply could not bring himself to cut off a 16-year-old’s arm. He sent me via helicopter to a different hospital to receive care from a different surgeon. He told me that I would never use my arm again. He grinned and nodded at me when I replied with an expletive about what he could go and do to himself. I asked for a cigarette lighter, and I repeatedly tried to light that thing until finally — two years later — I succeeded. Why? Because I refused to live as a victim. I didn’t want anyone’s pity.

I was probably 35 years old when I realized something new was wrong. I didn’t tell anyone. Family and friends would feel hurt, angry and frustrated when I’d cancel plans because I was “sick.” I wasn’t diagnosed with rheumatoid arthritis until I finally couldn’t stand what was happening to me and admitted to my doctor that I had a problem. By then, I was in my early 40s.

I write about my disabling conditions so my friends and family members understand that I love them and don’t want to cancel plans with them, but that I sometimes need to do it. I write about my conditions so others with similar conditions feel less alone, and so they know we can emotionally help each other through the difficult days.

I write about my conditions because for decades, I thought I was being strong by not complaining, by hiding my pain, by smiling and joking when I should have been resting my sick body instead of adding stress to it. I wasn’t being strong; what’s strong is being a vocal advocate for myself and for others who have disabling conditions.