Designers Corner - Capturing Day-to-Day Aspects of Living with Chronic Illness: The Need for Longitudinal Designs

Abstract

"You see, my time is occupied trying to live. ..There are those adjustments that you have to make if you're going to cope with it at all... Somehow things work out. But to say they get easier is far from the truth. They get harder. Because it's harder this year for me to even get around... It's so tremendous a frustration that I don't even think of it as a frustration. I mean, I can't explain it... But I don't sit around saying "I'm frustrated" I don't think. Eut I know life is one huge mountain of frustration. I think it's so big that you can't, you can't, ah, you just can't talk about it. It's hard to know what is the worst part. Because it's from the time you open your eyes in the morning until you close them at night. Your frustration never stops. And 1 think that's what gets ya. I can't sit and cry about it. Sometimes I wish I could... You get to the end of your tether some days and I wish sometimes I could just sit down and get a little release from it. But you can't. That's the worst part of it. Its omnipresence, you know. It never ceases." This quote from an elderly woman who has advanced macular degeneration and is caring for a spouse who has advanced Parkinson's disease (Russell, 1994) reveals how her current life's work focuses on their illnesses. She experiences the unremitting omnipresence of chronic illness as it pervades every aspect of her life, from the moment she wakes up in the morning until the moment she falls asleep at night. However, it is not the dramatic and unexpected situations that she is referring to. Her discourse is about her ordinary, daily routine of living with chronic illness, the taken-for-granted everyday activities of one who is chronically ill.