If you were recently diagnosed with systemic lupus erythematosus and are continuing to work, you may have questions or concerns about managing symptoms while on the job. Because lupus symptoms can flare and subside in unpredictable fashion, it may take some time to recognize which ones you experience when the disease is active, patterns that occur alongside your symptoms, and what acts as a trigger.
As you become more aware of the symptoms you deal with most often when working with lupus, you can approach your employer about accommodations that can potentially decrease symptoms while maintaining productivity. Protected by the Americans With Disabilities Act (ADA), a work accommodation is a reasonable change or adjustment made within a work environment that allows a qualified employee to perform the essential functions of their job.
Though it is often said that no two cases of lupus are exactly alike, let’s take a closer look at some of the most common symptoms that occur in people living with lupus and which adjustments may help manage symptoms and decrease the likelihood of a flare while on the job.
Fatigue is one of the most common lupus symptoms, with as many as 80% of people living with lupus experiencing it. Fatigue can occur for a variety of reasons—disease activity, medication side effects, interrupted sleep due to pain, among others—and it isn’t uncommon for people living with lupus to have to factor moments of fatigue into their work schedule.
There are strategies to manage this symptom while working with lupus, including:
- Remote work options: If moderate to severe fatigue is an issue for you, speak to your employer about remote work options. This can entail working from home full-time or for a certain number of hours per week. In addition, as you learn how lupus symptoms affect you, you might realize you are more fatigued in the morning or the late afternoon. Using this information, work with your employer to determine if you can work from home during those peak times of fatigue, and in the office during the hours you feel more energetic.
- Flexible work hours: Flexible work hours can be created based on your patterns with fatigue and your employer’s ability to provide this reasonable accommodation. For example, if you feel more energized after a nap or period of rest midday, you might ask for a one- to two-hour break in your schedule to accommodate this. Then you could return to work to finish your required hours. Another option could be catching up on hours during the weekend if you have to leave early during the week because of fatigue-related lupus symptoms. Last, if you tend to feel more symptoms in the morning upon waking, but notice a decrease in fatigue as your medicine starts working and the day continues, speak to your boss about starting your work day later than the traditional 9 a.m. start time.
- Fuel Your Workday: Living and working with lupus will inevitably bring moments where you feel fatigued but cannot drop everything and leave work immediately. To help combat minor bouts of fatigue throughout the day, remember to fuel yourself with foods that energize. These include apples, bananas, eggs, oatmeal, seeds and nuts. Also, keep in mind that dehydration can cause or add to your feelings of fatigue, so be cognizant of how much water you are drinking throughout the day.
- Ask for a Chair: If your position at work requires you to be on your feet for long periods of time, such as working as a cashier or bank teller, speak to your employer about having a stool or chair available. This can help with fatigue associated with standing for hours at a time, and can help you stay at the same level of productivity while also helping you manage your lupus symptoms.
Some men and women living with lupus will experience photosensitivity, sensitivity to ultraviolet (UV) rays from the sun or indoor lighting. Depending on the level of sensitivity, UV light can trigger fevers, fatigue, an increase in joint pain, and flu-like symptoms. If you work directly under fluorescent or halogen lights at work, both which give off UV rays, and experience photosensitivity, speak to your employer about an accommodation. Ask your employer or HR representative if switching to LED lights is a reasonable accommodation they are willing to provide to help you decrease the potential for a lupus flare and allow you to maintain productivity.
Joint or Muscle Pain
Joint and muscle pain are two additional lupus symptoms you may need to manage while on the clock. Depending on your work station setup and where your pain is located, adjustments that may help manage pain include the use of a special chair or desk, an ergonomic mouse, a headset telephone, special keyboard, or even speech recognition software if your pain is localized to your hands and fingers (and your job requires you to type).
Additional Ideas for Managing Lupus Symptoms at Work
When speaking to your employer about additional ways to manage lupus symptoms when working, you may also want to consider implementing a workplace buddy system. This elected coworker should be someone who understands lupus, respects your work ethic, and empathizes with the challenges you face on a regular basis. A work buddy can catch you up on meetings if you were unable to attend, or can be in charge of setting up a virtual meeting so you can be part of the conversation during the times you are out of the office. He or she can also help you navigate awkward social situations that may arise and cover for you in times of emergencies.
Finally, consider putting together an emergency kit to keep at work that can help you manage other lupus symptoms that arise from time to time. This kit could contain extra prescription medication, over-the-counter remedies, a heating pad or ice pack, a sweater, muscle rub ointments, and emergency snacks for moments when your energy begins to fade.
Managing lupus symptoms and working may feel challenging at times, but implementing a few practical strategies can help you decrease additional symptoms at work and increase your productivity—a win-win situation for both you and your employer.