The slogan, “Rare Disorders without Borders” conjures geographical borders—the borders between cities, states, nations, continents. Ideally, where a person is on a map should not factor into the availability of diagnostic, treatment, or support services. Yet illnesses can create borders within us that figuratively place people with rare disorders, or any disorders, in a world apart from those who are not ill. And although these borders are figurative in nature, they can function as barriers preventing full social engagement and interfering with important healthcare-related activities.
Figurative notions of internal borders are not a primary concern of scientists and clinicians. Writers, artists, filmmakers, and others from the Humanities are better on these and other matters related to illness effects on our inner world geography. Indeed, many of them have addressed this idea from their own experiences.
The novelist Virginia Woolf, who had a long and eventually fatal mental illness, knew her condition placed her in another location. From the vantage point of the figurative location she inhabited when ill, it seemed to her that “the world has changed its shape…the whole landscape of life lies remote and fair, like the shore seen from a ship far out at sea.” She saw that even this figurative border had a literal effect in that illness can cause people to “cease to be soldiers in the army of the upright; [they] become deserters.”
The writer and filmmaker Susan Sontag went further to describe how people can travel back and forth across these borders based on their state of health (or illness). “Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
Lest we are made to think that these figurative places where people can find themselves with their illnesses are always made out to be unwanted or to be avoided, the literary critic Anatole Broyard purposely journeyed to them during his illness from terminal prostate cancer. He wanted to be taken elsewhere in his mind at times, or as he put it, “I have to take my imagery along with my medicine.” His elsewhere was just over the border of consciousness: “I’ve had eight-inch needles thrust into my belly, where I could feel them tickle my metaphysics.”
What all this means is that people with chronic illnesses can seem to be with us within our own geographic borders, but not necessarily with us within the same borders of our internal worlds. They may be in another world or seem worlds away, and as a result they may be hesitant to engage in healthcare-related activities or ordinary activities of daily living. Therefore, health care professionals, family members, and others in the intimate spheres of people with chronic illnesses might consider crossing the borders and inhabiting their figurative worlds to make connections and to get their perspectives—or, to just keep them company in a place they’d rather be for awhile.
But just how might we get the perspectives of those inhabiting other worlds, and what might we expect these perspectives to be? How exactly could we keep people company in these other worlds when inhabiting them for a time could be to their benefit? The number of scenarios possible is vast with so many chronic illnesses manifesting themselves in so many ways and occurring in so many situations. I thus ask you, Dear Readers, to give us your thoughts on these questions.
 Woolf V. On Being Ill. Ashfield, Massachusetts: Paris Press, 2002
 Sontag S. Illness as Metaphor and Aids and Its Metaphors. New York: Doubleday, 1990.
 Broyard A. Intoxicated By My Illness: And Other Writings on Life and Death. New York: Fawcett Columbine, 1992.
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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