Managing Lupus and Work: Is Disability an Option?

How can you keep a job when lupus lands you in the hospital a few times a year? When you literally can't get out of bed many mornings? What if you're self-employed and have to meet tight deadlines?

These are some of the questions about work issues voiced by people in the WebMD Lupus Community. And, as lupus activist Christine Miserandino points out, working when you have lupus is not just a matter of struggling with logistics. At some point, some people with lupus need to consider whether they should stop working altogether. If your career is your passion, an important part of your identity, or a financial necessity, it can be a tough decision to make.

Though many people with lupus need to contend with work-related issues, each person needs to deal with them in their own way, Miserandino says. She suggests considering these questions if you are struggling:

• Can your employer make reasonable accommodations to help you stay on the job?
• Can you telecommute, work at home part-time, or take on less stressful responsibilities?
• Is applying for disability benefits an option?
• People in the community have a variety of experiences to share about their struggles with work issues.
  One woman who reluctantly left her job and applied for disability has found new pursuits that bring her peace. She has started writing a book, has more time to care for her health, and still hopes to be able to work part-time.
  A former health care administrator suggests being honest with your boss. Though it can be difficult in some types of jobs or in a slow economy, she says, many employers are willing to allow more flexibility and accommodations.
  But another member of the community says that despite experiencing major and minor lupus flares, she has kept quiet about it with the administrators at her job. She believes they have demoted other employees with chronic illnesses and she doesn't want to face the same fate. Instead, she focuses on staying healthy, and puts all her energy into work. She has also told a few trusted co-workers about her lupus in case she has a flare at work.
• Another woman, who worked 50 to 80 hours a week, says she took a short disability leave from her stressful routine, but it wasn't enough to ease her situation. Instead, she was able to work with her boss to restructure her duties, and she has purchased long-term care insurance for the day when she feels she can no longer work. Just knowing she has options has relieved some of her stress, she says.
  Do you have tips for working with lupus or for applying for disability? Share your strategies for working at a job or finding your way along the complicated route to securing disability benefits.