When I recently read the phrase, “I’m embarrassed to be sick,” it made my stomach clench and my breath catch. That’s exactly what I’ve been feeling: this vague sense of social unease even with close friends, a reluctance to be seen or even talk to people–especially those that knew me before I became chronically ill.
At the age of 55, after a lifetime of seemingly unrelated physical complaints and inexplicable pains that kept worsening, I was finally diagnosed in 2012 with Ehlers-Danlos syndrome, a genetic flaw which leads to defective connective tissues. This results in chronic pain and many other health problems, as body parts aren’t held together properly, joints dislocate spontaneously, tissues stretch or tear, lose elasticity, and wear out early.
I am ashamed of being sick. I spent my previous life trying to prove how tough I was, declared my independence early, made my own way successfully, and now I’ve lost it all.
Success was the first to go. My productivity at work declined until I had to give it up in 2008. I forfeited the income that made me self reliant, and now I’m dependent on SSDI. My toughness collapsed when I could no longer deny how much pain I was in, and how tired I was all the time.
I lost the defining characteristics of the first 50 years of my life. Now I’m weak, frail, and vulnerable. I’m ashamed for not being a productive citizen and feel like a free-loader because I depend on government benefits. I’m ashamed to be giving in to pain and fatigue, to have lost the battle I was supposed to win, to have lost the blessing of good health and vigor.
In our competitive society, chronic infirmity or illness is viewed as a personal failing rather than the random stroke of fate that it is. If my pain and disability were temporary, I would get sympathy and accommodation, but incurable suffering makes most people uncomfortable. They become impatient and distant, and I detect an undercurrent of belief that I must have done something to deserve this – something they can avoid doing.
If all the people not yet affected by chronic illness acknowledged all the undeserved pain in this world, they would be forced to confront their own vulnerability to the same forces. Instead, we all prefer to believe we have the power to prevent such disasters in our own lives. Sometimes I even catch myself thinking, “If you’re so smart, why did you let this happen to you?”
In my day-to-day life, when I’m out and about among “normal” people, I try to disguise or explain away my pains, put on a brave face, and hide my feelings of failure and shame. It fools everyone but me.
Angelika Byczkowski is a patient with Ehlers-Danlos syndrome. This article originally appeared in Inspire.