Labor Day – Lupus and Work

Labor Day – Lupus and Work

Today is Labor Day, and an opportunity to congratulate all the workers in this country. But, more than that, it is an opportunity to talk about work conditions, especially when it comes to autoimmune patients.


After a lupus diagnosis, for example, which is my case, if you want to keep working and feel you can still do your job, but you need a few adjustments, you have the right under the Americans with Disabilities Act (ADA) to ask your employer for “reasonable” accommodations.


“Accommodations are the steps, equipment, or processes that can be added at work to make sure you can continue working, even though you have a health condition,” explains Anne Alcazar, manager of Job Placement Services. Which accommodations you request will depend on how lupus affects your work abilities.


“For example, if you have trouble getting going early in the morning, you could request a work day that begins later and then work a little later into the evening,” Alcazar says. “Another example is asking to use specific equipment or furniture. I worked with one woman and her employer to arrange for her to have a stool by her workstation. Most of her job she could do standing up, but a stool provided her with a way to rest during the work day and remain on the job.”


To compensate for fatigue and pain, both common in lupus, you might ask for extra breaks, a closer parking spot, or the option to telecommute. A more ergonomic desk design, along with arm supports and writing aids, can help with joint weakness. When sunlight streaming in through her office windows became an issue for Jonelle Meyer, she asked her company to add blinds. The company also replaced fluorescent bulbs with low-wattage lights. “Now I want to be here because I don’t feel sick and I don’t feel fatigued,” she says.


Alcazar stresses that accommodation doesn’t mean abandoning your job responsibilities. You still have to do the work expected of your position, but “you have some methods that will support you to do the same amount of work as other workers,” she says.


Start by taking a copy of your job description to your health care provider. Together, figure out which accommodations would help you most, and have your doctor write a note outlining them. “Once you have all your ducks in a row and you know what you need, you can approach your human resources department confidently,” says Helena Costakis, who has lupus and is vice president of human resources at a nonprofit.


If you haven’t yet disclosed your lupus to your company, there’s no need to do so—even as you ask for accommodations. “The level of communication that an employee chooses to share is entirely up to them,” Costakis says. “Disclose only enough to get the reasonable accommodations to help you be successful.”


What if your company refuses your request? Companies can deny your accommodation if they believe it will cause them “undue hardship,” meaning it would be too expensive or difficult to implement. Or, they might offer an alternative accommodation they deem just as effective. “This means the employer is trying to work with you, even though it may not be exactly what you wanted,” Alcazar says.


It’s understandable to be concerned that requesting accommodations will threaten your job. But your company can’t legally fire you for having a medical condition. And they have good reason to keep you—especially if you’ve been there for several years and know the business, Alcazar says.


But what if your condition is too disabling for you to work? You may be able to receive Social Security Disability Insurance (SSDI) benefits. Still, Virginia attorney Sheri R. Abrams warns that obtaining benefits can be lengthy and is often unsuccessful.


To qualify for SSDI, most people will need to have worked at least 40 quarters—the equivalent of 10 years—and will need to have worked five of the past ten years. A younger person (someone in their 20s) will not need to have worked as long. Then, the Social Security Administration (SSA) will put you through a rigorous evaluation process.


How can you boost those odds? Abrams suggests applying for SSDI as soon as you stop working. Hire an attorney who understands your condition. And ask your rheumatologist, neurologist, or pain specialist to write a letter explaining why you’re unable to work. And good luck!


Either way, I´m hoping you be well. If you want to know how my process was, you can watch my testimonial here.


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