Telling Our Own Story...

It is both possible to suffer a disease without illness and suffer illness without disease. Illness connotes a moral condition and disease signifies a physical set of unfortunate bodily responses without moral imputation (Schneider & Conrad 1983). 

Further, the notion of illness conveys irregularity, victimization, pity and revulsion (Sontag 1978).  In the lives of the chronically ill, the struggle to sustain a balance between the physical and moral aspects of one’s condition can effectively blur the construction of identity, thus impairing socialization and independence by sapping the desire for either. The construction of identity does not take place in a vacuum. In many instances, the identity formation or the construction of Self is a process noticeable to us, as our participation in it progresses.

Take for example the simple act of relating how one has become disabled. Here, the story is the individual. Biographical data, integral to the formation of a personal identity, is the stuff of self, and a fragile artifact.  The effort one makes reciting this story is tremendous and in itself, an act of trust.

A common occurrence in this recitation, however, is the coopting of the tale by a friend or relative. In this instance, the individual is cut out of the loop of his or her own agency, because the telling of the tale is an assertion of his or her own self identity. When it is coopted by another, it is as if that identity is silenced.

When, at the same time, errors are made in the telling of the tale, an indescribable blow is made against the owner of the story. A kind of assault is made against the individual to whom the tale belongs. And, when this is done in the presence of a professional, it can undercut the validity of further input, making it seem unreliable.

Most of the time, the friend or relative does this action in an effort to “save time” because they have heard the story before and feel it may “drag on” more than is comfortable. For the individual to whom the tale belongs, it might be better if the friend or relative simply waited in the other room until the appointment is over.

For persons experiencing epilepsy, however, it can be difficult to ask the person to wait. The individual with epilepsy may feel the need to have a witness along to confirm certain aspects of seizure activity, such as the length of the seizure or convulsion.

We know that we cannot witness our own activity, but only report that something has or has not occurred. We are in a delicate spot at these times. We try to establish a sound self-image that can be respected by others. We also try to develop a sound relationship with the professional we are dealing with, and many times this is a physician. We know a doctor’s time can be limited, but we also know that there are salient elements in the story that will help the doctor to understand us best. 

How we tell the tale is as revealing as the tale itself.