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Background image courtesy of National Science Foundation. Credit: Paul Thompson and Arthur Toga, UCLA

To Tell or Not to Tell: Coping With Chronic Illness as a Science Trainee

S. Levine
United States
10 June 2005

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When you are newly diagnosed with a condition that is expected to last months or maybe years, you face a daunting set of challenges--medical, emotional, social, and professional--as you learn to manage your life with a chronic illness. For those in the midst of building careers in science, one of the toughest hurdles is deciding whether or not to disclose your condition to supervisors and colleagues.

We've all witnessed startling health disclosures by people already ensconced at the top of their careers. Steve Jobs, co-founder of Apple Computers, announced last year that he had a rare but curable form of pancreatic cancer. News anchor Peter Jennings recently told his audience that he was battling lung cancer. As a result, both Jobs and Jennings received generous outpourings of sympathy and support.

But should a science trainee at the bottom rung of his or her career ladder, with fewer employment benefits and far less job security, take similar risks in the workplace? Unfortunately, the answer is never clear-cut. The consequences of telling or not telling, either of which can be costly, are hard to predict and may vary according to your illness, job, status in the workplace, and the nature of your relationships at work.

Chronic Illness Takes Many Forms

Some health problems develop slowly over time; other conditions crop up suddenly, almost without warning. Both scenarios occur more commonly than you may think . . . even when you're young. It is estimated that 25 million people in the United States, or 1 out of every 10 Americans, has a chronic disease that causes major limitations in activity.¹ A European study reports that by the age of 50, more than a third of the workforce is managing a chronic condition, usually a cardiovascular or musculoskeletal disorder.²

Depending on the illness and its severity, you may need to miss work for tests, treatments, or doctor appointments. You may not be able to meet the same job demands or maintain the same hours you once did; there may be days when you tire easily or simply feel sapped of energy. Pain may restrict your mobility, or medications may impair your ability to concentrate.

Working Under a Magnifying Glass

You may worry about how other people will react to you if they learn that you're sick. You may lose your self-confidence or become depressed and anxious about the future. Although it shouldn't be the case, coping with certain psychiatric diagnoses, digestive disorders, or HIV is even more complicated because of the associated social stigma.

Many employees feel that if they have no problem performing their job, there is no reason to tell people in the workplace, especially because in doing so, they run the risk of being treated differently. "When you reveal health problems, people may take advantage of your illness to challenge your 'first authorship' and your ability as a scientist," says one graduate science student.

He cautions that disclosure may inadvertently trigger reactions from co-workers who are concerned about health, safety, or liability issues and who may place the discloser in the uncomfortable position of fielding more questions about their illness than they are prepared to answer. For example, if you disclose that you are being treated for epilepsy, a supervisor may worry that you will have a seizure in the lab. If you tell a colleague you are being treated for depression, your feelings may be dismissed as a normal case of "the blues."

Another scientist recounts his experience of returning to work a few weeks after suffering a traumatic brain injury as a result of a freak collision during a game of recreational softball. Knowing he wasn't feeling up to par and feeling overwhelmed by his grant responsibilities as a postdoc, he told his supervisor about his disability. Instead of receiving support, he says, "I felt like he used my admitting to a problem and asking for help as a justification for forcing me off the payroll."

Research on Disclosure

There is a paucity of research on disclosure, but a recent study in the United Kingdom examined predictors for self-disclosure among 610 staff members at a university who responded to a questionnaire about their management of chronic illness at work¹. The authors state the case for disclosure: "As a large number of chronic illnesses are hidden and not perceptible to others, receiving appropriate support from line managers and colleagues requires their knowledge and understanding of the employee's illness. Unless employees choose to inform significant others at work as to the nature of their illness, such support may be lacking."

The same study details the potential risks, which are far from inconsequential: rejection, discrimination, loss of social support, and even loss of employment.

Another study suggests that disclosure may be especially risky for those who are seeking employment. A research team in Hong Kong examined employer attitudes about hiring people with disabilities by responding to 409 job advertisements with identical application letters--except for the disclosure of various disabilities. There was a clear preferential ranking by employers in terms of the letters that elicited job interviews: People without a disability were most favored, followed by people with hearing impairments, then people who relied on crutches to walk, and lastly, people who were depressed.¹ Such results can make anyone skittish about telling too much too soon.

What Steps Can You Take to Help You Decide Whether to Tell?

• Make an appointment with your doctor to get a clear assessment of your medical situation and the impact it may have on your work. If you have been on leave, seek the doctor's advice about when you can safely return.
• Speak with someone in human resources to familiarize yourself with your institution's policies regarding sick time and leave, both paid and unpaid. This may give you a better sense of your ability to balance your illness with the demands of your position. Don't be surprised if you find that the rights of postdocs and other student trainees aren't clearly defined. Although some settings have institution-wide personnel policies governing trainees, others defer to individual PIs for setting the rules for their labs. In such a scenario, you may need to speak directly to your principal investigator (PI) to assess whether or not you can change your duties or shorten your hours; if there is some flexibility, you may want to consider options such as part-time work or leave to conserve your health.
• In the United States, determine whether you are covered by the Family and Medical Leave Act, signed by President Clinton in 1993. Among its provisions, the act guarantees certain workers up to 12 weeks of unpaid, job-protected medical leave when the employee is unable to work because of a serious health condition or needs to care for an immediate family member (spouse, child, or parent) with a serious health condition. Other countries, especially in Europe, provide more generous support in case of ill health, so check the legal system in your country.
• Legislation such as the Americans with Disabilities Act (ADA) , the Canadian Charter of Rights and Freedoms, and the U.K.'s Disability Discrimination Act (DDA) offer legal protections that make it easier to obtain special accommodations for disability-related problems. Be aware that in some countries even chronic illness can be considered a disability. The British DDA, for example, covers progressive conditions such as cancer, HIV infection, and multiple sclerosis. Furthermore, the act kicks in much sooner than you might think, at "the moment there is a noticeable effect on normal day-to-day activities," according to the language of the act.However, you are only protected if you disclose your disability. Before broaching the subject with your employer, know your legal rights. It is wise to get professional advice from an attorney or from one of the patient-advocacy organizations specific to your condition to learn about the types of accommodations that may be possible.
• In an ideal situation, social support in the workplace from sensitive colleagues can help you cope with your illness and better meet the demands of your job. It also may be reassuring to know that your colleagues are prepared to help you handle a medical emergency should it arise. But be selective in whom you tell, what you say, and when you say it. Trust your instincts and make sure your relationships are on a solid foundation to start. Don't forget to remind your employer that any health information you provide is confidential.

"More-generous policies on sick leave, family leave, and vacation time are required in the scientific community," comments the graduate student. "Superior benefits and policies will attract high-powered postdocs, whereas institutes that ignore the needs of their productive front-line workers will suffer."

One hopes that with increased awareness on the part of both supervisors and colleagues, the burden of disclosure will become easier. Supportive work environments and flexible organizational policies can go a long way not only in allaying the stress of chronic illness but also in fostering a workplace where all employees feel valued and confident about their future.

Sources on the Web:

The ADA: Your Employment Rights as an Individual With a Disability

The Family and Medical Leave Act

The U.K. Disability Discrimination Act

Long-Term Chronic Illness and the Workplace, by Sandra Kavanagh, Equality Authority (Ireland)

About the author:

Irene S. Levine, Ph.D., is a freelance journalist whose work has appeared in many of America's leading newspapers and magazines. Trained as a psychologist, she works part-time as a research scientist at the Nathan Kline Institute for Psychiatric Research in Orangeburg, New York, and she holds a faculty appointment as a professor of psychiatry at the New York University School of Medicine. She resides in Chappaqua, New York.

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