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Daniel E.
Protecting Your Job While Coping With a Chronic Illness
New York Times

June 19, 2009

It started with an odd sensation in her right hand and a feeling of exhaustion so profound she could hardly get through an hour of work, let alone a full day. After numerous tests and countless doctors’ visits, Natasha Frechette, then 27, learned she had multiple sclerosis, a disease that attacks the central nervous system and can cause numbness, blindness and eventual paralysis.

In addition to grappling with the diagnosis, Ms. Frechette was concerned about keeping her job as a data manager for a small research organization in Brooklyn Park, Minn. “I didn’t want to have to depend on someone to take care of me,” she said. "But I know that I could wake up tomorrow and not be able to walk."

Workers with chronic illnesses face chronic uncertainty, forced to worry not only about their health but about their jobs as well. The protections afforded chronically ill workers in the United States are thin and somewhat vague. To protect their health and their jobs, workers must navigate employers’ policies, which may include short- and long-term disability plans, as well as a patchwork of federal laws and regulations.

A recent study by the Center for Economics and Policy Research, a Washington research organization, found that among 22 rich nations, the United States was the only one that did not guarantee workers paid time off for illness.

Most other countries provide their workers not only with paid sick days, but also time off for cancer treatments, the study found. German citizens, for example, are allowed five sick days and 44 days for cancer treatment, if needed, in addition to vacation days.

Most employers in the United States allow employees to take days off for minor ailments, like the flu or outpatient operations, without docking their pay. And 41 percent offer employees days off — nine, on average — for illness or other reasons, in addition to vacation days, according to a 2007 survey by Mercer, a benefits consulting business based in New York.

But when an employee has a serious or chronic illness, like diabetes, major depression or lupus, the rules about time off become murky.

Two laws offer workers some relief. The Family and Medical Leave Act allows employees to take up to 12 weeks off each year for medical or family emergencies — but without pay. And the Americans With Disabilities Act requires employers to make reasonable adjustments for disabled workers, often in the form of additional time off.

Ms. Frechette explained her condition to her supervisor and said she would need time off for physical and occupational therapy. Her boss readily agreed, and Ms. Frechette, who plans to marry this fall, continues to work full time.

“I’m careful,” she said. "I don’t want my disease to be seen as a cop-out.”

If you are dealing with an chronic illness, here are some strategies to help you maintain your job.

If you have a condition that could interfere with your performance, tell your boss. “People are often afraid of being discriminated against,” said Rosalind Joffe, a career coach who counsels people with chronic illnesses. “I had one client who didn’t disclose his illness to anyone. His odd behavior led his boss to conclude he was a drug abuser.”

Be honest. Explain what your condition is and how it might affect your work. “Don’t be ashamed,” Ms. Frechette said.

A supervisor who understands what is wrong is less likely to make false assumptions about what you can and cannot do. “Be clear about your value and what you can deliver,” Ms. Joffe said. “If you’re a valued employee, your boss will work with you.”

If you feel you are being unfairly treated, speak with your supervisor. If that doesn’t work, go to the human resources department.

If your illness meets the definition of a disability, your employer is required to make reasonable accommodations to your job or work environment, according to the Americans With Disabilities Act.

What is a disability? “It’s a physical or mental impairment that substantially limits one or more major life activities,” said Chris Kuczynski, director of the division that deals with the disability act at the federal Equal Employment Opportunity Commission.

Although your illness may be episodic or controlled by medications, it is still a disability, according to a recent amendment to the law.

Your employer does not have to provide an accommodation if it would impose significant difficulty or expense. Asking for a car and driver to take you to and from work would probably not be reasonable, Mr. Kuczynski said. But taking time off for chemotherapy treatments certainly would.

According to the Society for Human Resource Managers, the top five accommodations for the disability act provided by employers in 2005 (the last year for which data are available) were parking or transportation modifications, making existing facilities accessible, offering new equipment to workers, restructuring jobs and modifying the work environment.

If you are not sure what type of accommodations you are entitled to or how to ask for them, contact the Job Accommodation Network (800-526-7234), a service provided by the federal Department of Labor. In general, the network recommends that you put your request to your employer in writing. If you work in a small, informal setting, that may not be necessary.

You can learn about the on-the-books rules by going to your company’s intranet or speaking with its human resources department.

If you need to take a few weeks or months off for an operation, for example, or chemotherapy, research your company’s short- and long-term disability plans. Disability policies typically allow you to take a specific time off at reduced pay. According to Mercer, the consulting firm, 78 percent of employers offer short-term plans and 80 percent offer long-term disability plans.

You can also tap into your 12 weeks of family and medical leave at any time. You may take the time intermittently or all at once. You will not be paid, but your job will be secure.

If the hours are too long or the work is too taxing to handle while you are ill, find out whether you could work part time or could even take a different job in your company.

If neither is feasible, explore new career possibilities. One of Ms. Joffe’s clients was a high-powered lawyer who had a serious heart condition. To reduce stress, he decided to give up litigation and become a teacher.

If you are worried about your finances or health insurance, be sure to check with the advocacy organization focused on your disease. The American Cancer Society, for instance, has a call center (800-227-2345) that helps people who don’t have health insurance or are on the verge of losing it.

If your illness finally prohibits you from working altogether, you may apply for Social Security disability insurance. The process is lengthy, and you must be able to prove that you cannot work at any job. The amount you are paid is based on your lifetime earnings — you can find the number on the annual statement you receive from the Social Security Administration.

Generally, payments are modest: the average in 2008 was $1,063 a month. But once you have received disability payments for two years, you automatically qualify for Medicare coverage.
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