Lupus and Work

Medically Reviewed by Sabrina Felson, MD on March 10, 2024
Written by Bobbi Dempsey
5 min read

Managing lupus while working full-time (or even part-time) can be tricky, especially when you can’t predict when you’ll have symptoms or how bad they’ll be. Changes to your work schedule and environment can help you stay productive. So can strategies to deal with your symptoms.

You may or may not decide to tell your boss and co-workers about your condition. But if you do, federal disability laws require your employer to give you reasonable accommodations to help you do your job.

Lupus symptoms like brain fog, fatigue, and pain can get in the way of your workload. To minimize them, first work with your doctor to come up with an effective treatment plan. There’s no cure for lupus, but the right treatment can reduce flare-ups, address symptoms, and prevent complications.

A healthy lifestyle also makes a difference in how you feel. This includes exercise, eating well, getting enough sleep, and staying out of the sun (to avoid the sun sensitivity that affects many people with this condition).

Beyond that, try these tricks to manage brain fog on the job:

  • Minimize distractions and avoid multitasking. Concentrating on one thing at a time makes it easier to focus. You might pause emails when you’re working on a project. Or wear noise-canceling headphones at times when you don’t need to interact with customers or co-workers.
  • Pace yourself. Allow extra time when you’re working on something that requires concentration. It helps to plan out multi-step projects in writing. Let your boss or co-workers know if you need help.
  • Visual cues can help. If you often forget things, leave yourself visual reminders. For example, put your headset on your keyboard to remind yourself about a recording you need to transcribe.

Fatigue is one of the most common symptoms that affects people with lupus. To deal with fatigue on the job, you might:

  • Prioritize. Plan your work schedule ahead of time, if you can. Highlight the most important tasks so you can focus on them first. If you tend to get tired at certain times of day, schedule high-priority tasks for times when you have the most energy.
  • Don’t skimp on rest. A good night’s sleep helps you start the day with as much energy as possible. Schedule breaks throughout your day, if possible.
  • Change your environment or hours. Ask your boss if you can telework on days you’re feeling especially fatigued. If you usually stand up to do your job, see if you can sit for at least part of the time. A flexible schedule might help if you have less energy at certain times of day.
  • Enlist help. Think about tasks you can delegate so you can focus on critical tasks that require your attention. And don’t underestimate the value of a good support network at home. That gives you more time to relax so you go to work well-rested.

It’s hard to concentrate on work when you’re in pain. Talk to your doctor about pain management. And take sick days when you need them. Some other things to try include:

  • Helpful equipment. A more comfortable chair can make a difference. If typing hurts your fingers, try voice-to-text technology. A mobility scooter might be an option if you do lots of walking on the job.
  • Movement breaks. Even a little exercise can reduce pain. Build several movement breaks into your day. Don’t sit in one position for long stretches.
  • Hot or cold therapy. Some people get pain relief from heating pads. Others find that an ice pack helps. Try keeping one of these on hand at your workplace.

Stress can trigger a flare or make your symptoms worse. To cut down on workplace stress, make self-care a priority. Breaks help with this. When you’re not on task, reserve time for stress-relieving activities such as yoga, meditation, exercise, a stroll outdoors, or whatever works best for you.

If you have a nerve-wracking work situation coming up, like making a presentation, planning it out ahead of time can make it feel less stressful.

You’re not legally required to tell your employer you have lupus. Your symptoms and the type of work you do may determine how much you decide to share. But telling your employer and co-workers about your condition means they can provide help when you need it.

Since lupus affects so many parts of the body, in so many different ways, everyone’s situation is different. Some people with systemic lupus can work for years with few issues. But others need some type of accommodation, such as flexible work hours or more frequent breaks.

The federal Americans with Disabilities Act (ADA) requires employers with 15 or more employees to make reasonable accommodations for an employee with a disability or chronic illness such as lupus. A reasonable accommodation is something your employer can provide without “undue hardship.” In other words, it’s not significantly expensive or difficult.

Examples of the type of accommodations that may help you manage lupus symptoms at work include:

  • Providing work equipment designed to be more comfortable and less stressful on your body
  • Allowing you to work in the shade or arranging your workstation to avoid direct sunlight
  • Setting up a dehumidifier, since humidity can worsen lupus symptoms
  • Establishing a quiet work zone that minimizes sensory overload

You may want to start with an informal conversation with your supervisor soon after your diagnosis. Even if your symptoms are mild at that point, it keeps your employer in the loop so they aren’t caught off guard if you need accommodations later on.

If you do ask for accommodations, you don’t have to put your requests in writing. You can make them during a conversation with your boss, if you prefer.

Your employer may document your request in writing. (If not, you might ask them to so you have an official record of your request.) They may also ask you to provide documentation showing that you need these accommodations because of your condition.

Your employer must keep your medical information confidential. If you decide to tell your co-workers that you have lupus or discuss your symptoms, that’s your choice. But your boss and others at the company can’t reveal anything about your situation without your permission.

If you think your employer isn’t providing accommodations required by the ADA or is otherwise violating your rights, you can get help.

The federal Equal Employment Opportunity Commission is in charge of enforcing ADA regulations. You can file a complaint with the EEOC explaining how you believe your rights were violated. They’ll investigate and, if they find your complaint is valid, decide what remedies you should get.