The other day I happened to mention – foolishly – to my mother that next year, when my daughter goes off to kindergarten, I’d like to go back to work full time. “Oh don’t do that,” she said in her best disapproving tone, “you’ll be too tired.”

In that brief moment, I had a sudden understanding of my past 39 years. I saw myself through my mother’s eyes: frail, weak, prone to breakage, like a fragile china vase that you never take off the display shelf. In fact none of these images are true. I am only very mildly ill with CF, yet often I perceive myself as physically vulnerable and easily damaged. And I perceive myself that way, despite my relative good health, because my parents have been telling me so all me life. When I was little, my parents hovered around me and my illness like nervous bats. At the least sign of an oncoming cold or sniffle, they kept me home from school; I would cry and scream and insist that I be allowed to go, but they always won.

When I coughed, my mother would look simultaneously worried and irritated.

When I was reluctant and stubborn about taking medicine, my father would scare me with horror stories of the “really sick” patients and what dire things happened to “those people” who let their disease get the better of them.

They always encouraged me to rest, to take it easy, to not push myself physically. Although I never thought about it as I was growing up, their incessant portrayal of me as weak has made me believe it.

What messages do parents unwittingly send their children? My parents certainly never talked about my disease. It shadowed our family, unspoken and accorded no emotion, like the wallpaper in the dining room or the carpet on the floor. It was simply there, but no one would acknowledge it.

I learned, too, this neat and tidy avoidance of truth, and went along merrily into adulthood pretending I didn’t have any problems. I pretended there was nothing wrong with me, and often pushed myself to exhaustion to prove I could work, play, and live just like anybody else. Of course that can’t last for long; my disease caught up with me, inevitably, and it was so very angry for being ignored all those years.

Eleven years ago I had my first episodes of hemoptysis. Fear of the bright red color, splashing into the sink bowl, transformed itself into an anxious and grotesque habit of spitting on the back of my hand from time to time, hoping not to see blood. I began to polarize my image of my disease: instead of pretending to complete health, I was convinced of my inevitable regress toward lung failure. These words are frankly comical as I read them now, but how powerful their grip on me over the years, how fertile a ground for depression, anxiety, and panic.

Four years ago, after my daughter was born, I started having monthly lung infections, and have since been on and off antibiotics fairly regularly. Yet I am still (I think) essentially “one of the healthy ones”: I have never been hospitalized, I have minimal pancreatic problems, I live a normal suburban life. When I am coughing a lot, or when I feel generally tired and run-down, then my picture of my self is drawn in gray tones, gloomy and pessimistic. My parents’ evident fears reenact themselves within me, and CF looms as a fatalistic jailor, trapping me away from life with its attendant potential dangers. Once I get better, then, I try to forget about my body with all its faults, yet these days I am (fortunately) afraid to ignore it completely for fear of revenge. Neither perspective is healthy. Neither perspective is true.

I struggle every day with this image of myself within this hateful disease. Sometimes I actually go for long periods of time “being good”: accepting reality, keeping healthy, maintaining emotional strength. Taking care of my CF is the easy part - that’s simply an assortment of technical habits I am trying to instill. The really hard part is this: a lifelong journey of wrenching away from my parents’ perceptions, toward, inevitably, my own.