Lupus in the Workplace: Navigating Disclosure, Accommodations and Advocacy
Written by Katie Kantola
Lupus affects far more than a person’s physical health. It impacts careers, finances, mental health and everyday workplace experiences. For many individuals living with lupus, maintaining employment while managing unpredictable symptoms like fatigue, pain, brain fog and flares can be incredibly challenging.
National estimates suggest that only about 30% of people living with lupus are employed full-time, highlighting the significant impact this disease can have on daily life and long-term career stability.
To help shed light on the realities lupus patients face in the workplace, the Michigan Lupus Foundation previously spoke with Jessica Barker, an HR Compliance Specialist, about employee rights, workplace disclosure, accommodations and the importance of self-advocacy.
Interview with Jessica Barker, Human Resources Specialist
Q: What protections exist for employees living with lupus?
Employees living with lupus may be protected under the Americans with Disabilities Act (ADA). The ADA is a federal law that protects individuals with disabilities from discrimination in the workplace and allows eligible employees to request reasonable accommodations that help them perform their job duties successfully.
For lupus patients, accommodations can make a tremendous difference in maintaining employment while protecting their health and well-being.
Q. When should an employee disclose their lupus diagnosis in the workplace?
There’s no one-size-fits-all answer. Disclosure is a personal decision and depends on the individual’s symptoms, job responsibilities and whether accommodations are needed.
If lupus symptoms begin interfering with work performance or attendance, it may be helpful to disclose the condition to Human Resources or a supervisor in order to begin the accommodations process. Employees are not required to share every detail of their medical history, but enough information may need to be provided to support accommodation requests.
The most important thing is understanding that employees have rights and legal protections once they disclose a disability or chronic illness.
Q: Is it possible to disclose too much?
Yes. While transparency can be beneficial, employees should also maintain professional boundaries and protect their privacy. It’s important to share information strategically and with the appropriate individuals, such as HR or management, rather than feeling obligated to explain your medical condition to everyone in the workplace.
Unfortunately, invisible illnesses like lupus are often misunderstood. Some coworkers may not fully understand why accommodations are necessary and could perceive modified schedules or flexibility as “special treatment.” This can sometimes lead to unfair comments or judgment.
That’s why it’s critical for employees to know they are legally protected from discrimination and retaliation after disclosing a disability or medical condition.
Q: What workplace accommodations are commonly requested by lupus patients?
Accommodations vary depending on how lupus affects the individual, but one of the most common requests is a modified work schedule due to extreme fatigue.
Other accommodations may include:
Flexible work hours
Remote or hybrid work options
Use of a service animal at work
Longer or more frequent breaks
Accessible parking spaces
Workstations close to restrooms
Reduced physical demands
Memory aids or organizational tools
Reduced distractions in the workspace
Specialized equipment for phones or computers
Protective clothing or UV protection for outdoor work
Mobility assistance for jobs requiring significant walking
Reasonable accommodations are designed to help employees continue contributing successfully while managing their health safely.
Q: What should lupus patients know if work becomes too difficult?
Lupus can be incredibly isolating, and many people value work not only for financial stability but also for social connection and purpose. However, there may come a point where medical leave, short-term disability, long-term disability or even a career change becomes necessary. If you find yourself in this position, please reach out to the Michigan Lupus Foundation for guidance.
For individuals in physically demanding jobs or positions with long hours and high stress, accommodations alone may not always be enough. Supervisors and employers also vary in their level of understanding and support.
It’s important for lupus patients to prioritize their health and advocate for what they truly need. Sometimes the healthiest decision is exploring a different role or work environment that better supports long-term well-being.
Closing Thoughts
Living with lupus in the workplace often means balancing ambition with unpredictability. Many lupus warriors silently navigate fatigue, chronic pain, cognitive challenges, medical appointments and fear of judgment while continuing to show up professionally every day.
We encourage employers, coworkers and communities to foster understanding, flexibility and compassion for individuals living with chronic illnesses. Creating supportive workplaces doesn’t just benefit employees with lupus. It creates healthier, more inclusive environments for everyone.
To those living with lupus, your experience is real, your challenges are valid and your health matters. Advocacy, boundaries and support are not signs of weakness. They are essential tools for sustainability and success.