The Gray Area

Independence has come to be seen as one of the most endearing qualities a person can exhibit. Self-sufficiency is considered to be not only admirable, but necessary for success. Freedom, liberty, autonomy; all of the qualities that we – in the western world - have come to respect and desire are directly related to ones ability to live independently.

With such an emphasis on independence it is no wonder that individuals living with life-threatening diseases often experience high levels of strain. All too often, life demands one way-of-being while society demands another. Life asks for rest and rehabilitation while society asks for commitment, dedication, and time. Life asks for patience while society asks for results.

CF patients live in the gray area between life and society.

One the one hand, we are constantly aware of the expectations that society sets out for us. Get a job, get married, start a family, etc. On the other hand, we are forced to accept the fact that life with CF often limits our potential to reach these expectations.

I want to work; but I am not always able to balance my career and my health. I want to get married; but at the same time, I am forced to consider the fact that one day I will inevitably leave my wife behind. I want to start a family; but I do not want my children to grow up without a father. These are the considerations that make even the most basic decisions so difficult.

We, as CF patients, are completely and utterly dependent. The disease robs us of our ability to live self-sufficiently. Our pills, our masks, our puffers, our doctors, our clinic appointments - each one is a blow to our autonomy.

Many of us long to live recklessly. To hastily and thoughtlessly navigate through life. To make decisions based on needs and desires. Unfortunately, this kind of carefree lifestyle is not conducive to life with CF. Each decision, no matter how big or how small, is carefully considered. The pros and cons must be weighed, the outcomes must be analyzed and the risks must be justified. The demands of life are contrasted against the demands of society.

Want to think like a CF patient? Ask yourself, would I be where I am today if there was no possibility of a tomorrow?

Welcome to life with CF.