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Lupus on the Job: Your Rights and Responsibilities

If you have lupus, this article will help you understand your rights under the Americans With Disabilities Act, and offer tips on how to talk with your employer about getting the accommodations you need.

When you’re diagnosed with lupus, you may have many questions about how to handle your lupus at work. You may wonder how long you’ll be able to work. Or what to do if there are certain job functions you have difficulty doing. And you may worry about whether to tell your employer and coworkers that you have lupus.

How you answer these questions depends largely on your individual symptoms and what kind of work you do. Many people are able to work for many years with lupus. But you may need to adjust your schedule or your work environment. For example, you may need to work different hours or take longer breaks. Or, you may need special tools to help you do your job. These are called accommodations. The key is to work with your employer to find accommodations that are acceptable to you both.

This article will help you understand your rights as an employee and offer tips on how to talk with your employer about getting the accommodations you need to continue working.

Know Your Rights as a Person With Lupus

Before talking with your boss about your lupus it’s important to know your rights.  Learning about the American with Disabilities Act (ADA) can help. The ADA requires employers to provide reasonable accommodations for employees who have a disability, including lupus, so they can continue to perform their job.

You may also want to talk with a job accommodation specialist. The Job Accommodation Network (JAN) at askjan.org is a free service of the U.S. Department of Labor’s Office of Disability Employment Policy. A JAN consultant can talk with you about your limitations and help you brainstorm accommodations that may work for you. The consultant can also coach you on how to talk with your employer about your disability.

“Some people feel bad about asking for an accommodation, or are nervous that their co-workers will get upset if they get special treatment,” says Linda Batiste, a principle consultant at JAN. “But I remind them that it’s not really special treatment. They are only asking for what they need to continue doing their job.”

Ask for an Accommodation If You Need One at Work

If you need help doing your job, you need to tell your employer about your disability and ask for an accommodation. Under the ADA, employers aren’t required to provide accommodations until they have been told you need one. You can ask for an accommodation in writing, in a personal meeting, or by doing both.

“I usually recommend writing a letter so you have a written record of your request,” says Eddie Whidden, a senior consultant for JAN. “But it’s also helpful to meet with your employer in person to hand over the letter and talk about your request. This approach works well for a lot of people.”

When asking for your request, here are a few ideas to keep in mind:

  • Be specific. Think about the specific job functions you need help with and offer some ideas for accommodations that might help. For example, if you have photosensitivity, you might request special lighting. Or if you become fatigued in the afternoon, you could suggest a shorter workday or a longer break after lunch. It’s also a good idea to include medical records or a note from your doctor to back up your request.
  • Try to focus on the positive. “Tell your employee how a particular accommodation will make you a more productive employee,” says Batiste. “Let your employer know how the company will benefit from making this accommodation and help you do your job better.
  • Keep an open mind. Although it’s helpful to offer specific suggestions to your employer, it’s also important to keep an open mind. “Your employer may have other ideas about how to help you. So try to stay flexible and consider all possibilities,” says Batiste.

Be Sure to Research the Right Accommodation for You

Because the symptoms of lupus can vary from person to person, there are a wide range of possible accommodations. The type of accommodation you need will depend on your specific symptoms.

“The most common accommodations we see for lupus have to do with a modified work schedule because of fatigue,” says Whidden. “Shortening work hours or having a flexible start time can be very effective.”

Some other types of accommodations for lupus may include:

  • Longer breaks
  • Flexible work hours
  • Working from home
  • Use of a service animal at work
  • Use of a personal attendant at work
  • Special lighting around your workstation
  • A workstation close to the restroom
  • A facility and workstation that are accessible
  • A scooter or other way to get around if your job involves a lot of walking
  • Special equipment to operate the computer or telephone
  • A parking spot close to your workplace
  • Memory aids, such as organizers or a schedule
  • Minimizing distractions around your work area
  • Reducing job stress
  • Special protective clothing or hats to block UV rays when working outside

“People with lupus come up with all kinds of solutions that work well for them,” says Batiste. “We encourage people to be creative and to really think outside the box. The more options you can give to your employer, the more likely you’ll find a solution together.”

In some cases, you may ask that non-essential tasks be removed from your workload if you have trouble performing them. “We spoke with a schoolteacher who had light sensitivity,” says Whidden. “She had no trouble performing her job in the classroom. But it was difficult for her to do recess or lunch duty outside. This is the kind of task that may be deemed non-essential.”

Tell Co-workers About Your Lupus Only If You Are Comfortable

Whether you decide to tell your coworkers about your lupus is up to you. Under the ADA, your employer can’t tell other employees about your condition or about any accommodations being made for you unless the employee “needs to know.” This may be the case for your direct supervisor or boss.

“Some people want everyone to know, so coworkers understand why they are getting what might look like special treatment. Other people don’t want anyone to know. It’s really up to the individual,” says Whidden.

Consider Another Job If Lupus Interferes With Work Too Much

It may be that you and your employer are not able to agree on accommodations. Or it may be a hardship for your employer to make the accommodations you need. Under the ADA, employers are not required to make changes that are too costly or too disruptive to the company.

You may also find that it’s too difficult for you to deal with the stress of your job and the symptoms of lupus. In these cases it may be time to look for another job or think about switching to part-time hours at your current job.

“Sometimes, despite the best efforts to make accommodations, people have disabilities that just don’t fit with their job,” says Whidden. “Rather than getting stressed out about trying to continue to do a certain job, people are often a lot happier finding other work that fits better with their disability.”

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