Manage Your Job and an Autoimmune Disease
Just as millions of Americans hit their stride professionally and personally, their bodies turn on them -- literally -- sometimes bringing careers to a screeching halt.
As many as 50 million Americans, or 20 percent of the population, must manage one of 80 serious, chronic diseases that cause the body's immune system to turn on itself, according to the American Autoimmune Related Diseases Association (AARDA). Among the most well-known autoimmune (AI) conditions are lupus, rheumatoid arthritis, multiple sclerosis (MS) and scleroderma. Symptoms include numbness, fatigue, cognitive dysfunction, muscle tightening and cramping, dizziness, pain, visual disturbance, poor balance and clumsiness.
For unknown reasons, 75 percent of AI diseases occur in women, usually appearing during their childbearing years, according to the AARDA. Because this is also prime career-building time, managing these disorders can be particularly difficult. Together, these disorders represent the fourth-largest cause of disability among American women.
Many workers with autoimmune diseases retire prematurely. But health-oriented job counseling from professional rehabilitation counselors can help them keep working, according to Saralynn Allaire, research associate professor of medicine at Boston University and a specialist in AI work disabilities.
Accommodating an AI Disorder
Each state offers federally funded vocational rehabilitation programs, usually run through their education or health departments. These programs work with employers, but employees usually must initiate contact. Rehabilitation counselors prioritize an employee's health issues and help devise solutions. For example, if fatigue makes working an eight-hour day impossible, accommodations might include extra rest periods, reduced hours or the ability to work at home. Simple accommodations like a different keyboard or nonhandheld phone also can help.
Out-of-office issues affecting work, such as a long commute or family responsibilities, are also assessed. AI diseases often result in fatigue, so conserving energy is crucial. Workers with AI diseases can make life easier by getting household help, using convenience foods, commuting at off-peak hours or obtaining a handicap sticker for the car.
Allaire says professional rehabilitation counselors can also inform those with AI diseases about their rights under the Americans with Disabilities Act. Counselors can alert employees to resources such as the Job Accommodation Network and help workers ask for accommodations appropriately. And if employees can't make changes or long-term prospects appear poor, counselors can help them change positions or look for new work.
Flares, or sudden, severe onsets of AI disease-related symptoms, present a unique challenge. Allaire advises judicious use of your sick and vacation time. If you sense a flare coming on, take a day or two off to manage it early rather than waiting until you're in a full-blown episode. Some people think reducing stress helps ease or prevent flares, though there is no scientific evidence of this.
Should You Tell Your Employer?
An issue for workers with AI diseases, particularly women, is whether to disclose their condition to colleagues and employers. Rosalind Joffe, founder of CIcoach.com, a Boston-area firm that helps people with chronic illnesses thrive in the workplace, says that because most AI symptoms are invisible, others are often unaware you're suffering. "Illnesses that create severe fatigue or cognitive problems can feed into cultural stereotypes about women as workers," explains Joffe, who has MS. "That puts the burden of proof on the sick person, requiring a well-honed level of emotional intelligence and good communication skills."
Elisabeth Lanjuin, vice president of the Lupus Foundation of New England, urges workers with AI diseases to be cautious about disclosure. "People can't see fatigue, but even after disclosure, some people might think it's just an excuse for not working hard," she says. "In a perfect world, you'd disclose and your employer would accommodate, but that's not always the case. If you do disclose, be ready to provide your employer with educational resources."
How you approach your employer is key, says Joffe, particularly if you expect accommodations. "You have to think about what you want to say, how you want to say it and how you want others to respond," she says. "Unfortunately, the onus is on you to present your employer not with a ‘problem' but with a solution that is clearly in their best interest."