Chronic Illness and the Academic Career

Article excerpt

One of the things I find difficult is that many of my colleagues do not know of my illness. I can only assume what they might think privately about my tiredness and various energy levels. I try to be "on" at work, but some days are better than others. . . . Even the people who do know that I have medical problems do not always get what that means. . . . It seems to be a losing battle. Trying to educate others rarely seems to make much of a difference, since I look fine.

-contributor to Chronicle of Higher Education forum on chronic illness and academia

The academic quoted above is not alone; he or she is experiencing dilemmas familiar to the thousands of faculty and staffmembers who manage challenging academic careers along with the challenges of a chronic illness. Recent research by the Robert Wood Johnson Foundation indicates that more than half of Americans experience at least one chronic illness-a longterm health condition that persists over time, has recurring (often "invisible") symptoms, and requires long-term medical intervention. Aside from a 2008 National Science Foundation report in which 7.3 percent of science and engineering faculty members reported having disabilities, no largescale studies have tracked chronic illness among faculty members. The National Science Foundation's data likely underestimate the percentage of faculty with disabling illnesses, given the challenges of documenting disability and the fact that the data were collected prior to changes that broadened the Americans with Disabilities Act (ADA).

In a 2003 article in Academe, Elaine Beretz called upon academic institutions to recognize the issue of chronic illness in the academic career. Precious little attention has been devoted to chronic illness, however. Given that the ADA now requires accommodation for disabling chronic illnesses, our academic institutions need to consider this issue more seriously. Despite the challenges they face, people with chronic illnesses can be highly productive, highfunctioning members of the academic community. The key to their success lies in institutional policies and practices that ensure equity and support their productivity.

Fortunately, a subcommittee of the AAUP's Committee A on Academic Freedom and Tenure has recently developed a framework for policies on disability. The subcommittee's report, Accommodating Faculty Members Who Have Disabilities, lays out clear guidelines for providing accommodation for disabilities. While it represents a major step forward in its attempt to address the lack of clear policies at many institutions, the report does not address the stigma surrounding chronic illnesses.

Both faculty and administrators need to recognize the predicament faculty members may face when seeking accommodation for a disability. For a person with an intermittent or progressive disability, challenges include whether and to whom to disclose the condition and how much about the condition to disclose, how to assemble resources, and how to navigate career expectations. Published accounts and contributions to online forums from faculty members who have disabling illnesses, particularly the ongoing forum in the Chronicle of Higher Education cited at the outset of this article, help illustrate the issues involved.

THE STIGMA OF CHRONIC ILLNESS

Unlike acute illnesses and injuries, such as the flu or a broken arm, chronic illnesses-lupus, Crohn's disease, multiple sclerosis, arthritis, diabetes, mental illness, and cancer, for example-require long-term management. Many chronic illnesses have highly variable symptoms that are largely invisible to others. The symptoms can cause fatigue and pain, affect cognitive function, create sudden emotional shifts, and even impair speech. Such symptoms may not be detectable to an outside observer, yet 20 percent of individuals with chronic illnesses report that their symptoms are debilitating or limit life functions significantly. …