If you break a leg or have a cold, it probably wouldn’t affect your identity at all. But when you have an invasive, chronic illness, it will probably change your way of being in the world, and the way you perceive yourself. Our body is the vehicle with which we interact with the world. There are many personal accounts in the disability bioethics literature on how a chronic illness affects one’s sense of being. For example, in the work of Kay Toombs, who was diagnosed with multiple sclerosis, or Havi Carel, who was diagnosed with lymphangioleiomyomatosis (LAM), a rare lung disease. Both describe how their illnesses gradually changed their identities, their senses of being.
With the inability to pursue certain goals and projects that used to be important to her, Toombs experienced a loss of the various roles she occupied: professional, lover, caregiver, student, mother, and breadwinner. Toombs describes how after a certain amount of time, she got used to her new body and to the use of a wheelchair. Just as a woman who is used to wearing a hat with a large feather intuitively allows for extra space for the feather when walking through a door, so for Toombs her wheelchair eventually became part of her body. However, this new bodily scheme entails a loss of the old identity that is so profound that she can’t even remember being the old person.
When I see myself on a home video, I experience a sense of puzzlement. I catch myself wondering not so much whether the body projected on the screen is my body, but, rather if the person in the video is really me.
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.