Working With Lupus
Reviewed by: HU Medical Review Board | Last reviewed: January 2020 | Last updated: March 2021
An autoimmune condition like lupus can cause many symptoms that may make it hard to work. Achy joints, headaches, fatigue, arthritis, sun sensitivity, brain fog, and seizures can all get in the way of a productive day on the job. The unpredictability of lupus adds another layer of difficulty.
All of this may be why only half of the adults with lupus work. One study found that 5 years after diagnosis, 15 percent had stopped working. By 10, 15, and 20 years after diagnosis, roughly 33 percent, 50 percent, and 66 percent had stopped working. Still, 40 percent returned to work after stopping.1
ADA and FMLA: How these laws help people with lupus
The good news is that treatment may help you control lupus enough to keep working. However, to stay on the job as long as possible, you may need to use some of the legal protections provided by federal law.
Figure 1. A woman sits at a home office desk, working on a laptop.
There are two government laws that protect people with lupus who want to continue working:
- Americans with Disabilities Act (ADA)
- Family and Medical Leave Act (FMLA)
The ADA requires companies to provide “reasonable accommodations” for employees with disabilities. It also prevents employers from discriminating against someone with a disability. What is considered reasonable can vary widely by the size of the company and the person’s needs? Some common examples for people with lupus may include:
- Adjustable workstation
- A more supportive chair
- Remote work
- Fan or space heater
- Additional breaks
- Non-fluorescent lighting2
The FMLA is a different law that allows employees to take up to 12 weeks off during the year to take care of their health condition. This time can be taken off in a single 12-week stretch such as for maternity leave or major surgery. It may also be taken in smaller chunks, such as time off for doctor appointments or recovery from flares.2
There are requirements that the employee must meet for both the ADA and FMLA. For instance, in most cases, you will need medical proof of a lupus diagnosis, and a doctor’s letter recommending time off or accommodations. Your company may have forms for you to fill out and you should make any requests for accommodations in writing. Very small companies may not have to accommodate employees with disabilities.2
Finding a different job
For some people with lupus, a career change may be required. For instance, someone who works as a pool lifeguard or landscaper may get too much sun and need a job indoors. Another person may need a part-time desk job rather than a full-time position that requires being on their feet all day.
When you cannot work anymore
If you worked a certain amount of time, you may qualify for Social Security Disability Insurance benefits (SSDI). SSDI pays out up to $2,633 a month (in 2015), if you qualify. Your dependent children also may be able to get some benefits.
It can take up to 2 years to qualify, and only then after meeting strict requirements. You may need to hire an attorney, fill out many forms, and go before a judge to get SSDI benefits.2
Resources to learn more
Many websites exist to help employees and companies understand the requirements of the ADA and FMLA, including:
- Job Accommodation Network
- U.S. Department of Labor
- National Association of Social Security Claimant’s Representatives (NOSSCR)
- Lupus UK
Work provides many financial and social benefits. It preserves self-esteem and wellbeing. Some studies even show that those who can remain in a job have better health for longer. By working with your health care team and your employer, you may be able to boost your bank account as well as your health.1