If working with Lupus is becoming part of your job description, it's time to know your rights and responsibilities. It may also be time to learn new ways to tackle your job so you can continue being an excellent employee. 

According to the Lupus Foundation of America:

  • 1.5 million Americans have Lupus.
  • 90 percent are women
  • Two out of three lupus patients report a complete or partial loss of income because of the impact Lupus has made on their health and ability to work full time.
  • One in three have been temporarily disabled by Lupus.
  • One in four currently receive disability payments.

Lupus is a systemic autoimmune disorder that causes widespread tissue and organ damage. Its hallmark symptoms include fatigue, sensitivity to light, muscle and joint aches, headaches, anemia, swelling, skin rashes and more. Not every patient experiences all symptoms, but about ten percent of Lupus patients also have other autoimmune disorders like fibromyalgia or arthritis, which have their own symptoms. As daunting as these symptoms sound, many people with Lupus are able to continue working with a few accommodations.

Lupus is included on the list of diseases covered under the American Disabilities Act (ADA). That means employers can't discriminate against an employee with a qualifying disability and they're required to make reasonable accommodations so the employee can do her job. The term "reasonable" however, is sometimes up for debate. Employers aren't required to make changes that are too expensive or disruptive for them to accommodate. They're also only required to make accommodations if they know about their employee's disability.

For many people with lupus, the first hurtle to continue working is telling their employer they need help. Many worry that telling their employer will dent their professional reputation or make their work life more difficult. If your condition is affecting your ability do your job to your usual standards, there may be no way to avoid that conversation.   

Disclosure

  • Start by getting a letter from your physician stating what your diagnosis is and what accommodations you might need. Accommodations mean changes that help you do your job - things like flexible hours, longer lunch breaks, working from home, job sharing, special or assistive equipment, limitations of certain duties and other changes
  • Contact a consultant at the Job Accommodations Network for ideas about which accommodations might help you on the job.
  • Craft a letter to your employer that details your requests. Be sure to include positive messaging that emphasizes how making specific accommodations will benefit your employer.
  • Schedule a meeting with your employer to discuss your condition and accommodations. Bring the letter and give it to your employer. This documentation is important to protect your rights under the ADA.

If you think it will be easier to work if your coworkers understand what's going on, then tell them. If you think it would hamper your workday or professional relationships, then don't. Your employer isn't allowed to discuss your condition without your consent. 

Necessary Accommodations 

The American Lupus Foundations offers these suggestions:

If you work in an office setting, changes may include:

  • Modifying your workstation to relieve physical stress factors
  • Placing light shields over fluorescent bulbs and anti-glare filters on computer screens
  • Using ergonomic keyboards and desk chairs
  • Having a couch available for periods of rest

If you work in outdoor occupations, changes may include:

  • Taking on tasks that are less physically demanding
  • Having more frequent rest periods
  • Avoiding the sun at midday

At some point, you may need to consider quitting or changing your job if someone with your disability simply can't perform your duties. But until that day comes (and it won't come for many people), continuing to work at the best of your ability is beneficial for employers and employees alike. 

Sources:

Lupus Foundation of America - http://www.lupus.org/newsite/index.html

US Department of Justice Americans with Disability Act  - http://www.ada.gov/

Job Accommodation Network - http://askjan.org/media/lupus.html