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Telling Your Employer You Have Lupus

What you need to know when you disclose your diagnosis to an employer.

Telling Your Employer You Have Lupus

Lupus is a potentially debilitating autoimmune disease. Roughly 90 percent of people who have lupus are women, and the condition is most often diagnosed between the ages of 15 and 44—a time when work and career are an important part of life.

Unfortunately, living with lupus comes with a number of challenges. Common symptoms include fatigue, sensitivity to light, muscle and joint pain, headaches, swelling, and skin rashes. Not every patient experiences all symptoms, and symptoms can vary in severity from person to person. It is a lifelong condition that requires ongoing management.

As daunting as lupus can feel at times, many people with this condition are able to continue working. If lupus is mild and is not affecting your ability to do your job, you may not want to disclose your diagnosis or delay disclosing your diagnosis.

Depending on how lupus is impacting you and the demands of your job, working while managing lupus may require a few accommodations to your work schedule, work environment, and the type of tasks you perform at work. This will require talking to your employers about your diagnosis and what you need.

Here, we look at some strategies that may help when talking to your employer about your diagnosis, along with some information on when lupus qualifies as a disability.

Understand your rights
The Americans with Disabilities Act (ADA) is designed to protect people against discrimination they may face as a result of having a medical diagnosis. These laws are enforced by the Equal Employment Opportunity Commission (EEOC). The ADA require employers to make reasonable accommodations to qualified employees if it does not cause “undue hardship” to the organization. However, the definitions of reasonable accommodations and undue hardship is open to interpretation. Just as a healthcare provider is your best source of information about your health, a lawyer will be your best source of information about how these laws apply to your situation.

Talking to your employer
Many people with medical conditions find it difficult to tell an employer they need help. Many people with lupus are concerned about being stigmatized because of their condition. While the conversation may be difficult, it is often times necessary.

These tips may help you have the conversation:

  • Start by talking to your healthcare provider about the demands of your job and what aspects of your job are more challenging because of lupus.
  • Ask your healthcare provider for a letter outlining your diagnosis and what accommodations you might need. Accommodations refer to changes that help you perform your job—things like flexible hours, special or assistive equipment, or limitations on strenuous activities.
  • Determine who you need to talk to, and who at your company needs to know about your diagnosis. You should be able to find this information through your employer’s HR department and/or documents that outline company policies.
  • Think about what you would like to say to your employer, and make notes that you can keep with you when you have the conversation. Be sure to include positive messaging that emphasizes how specific accommodations will benefit your job performance—and by extension, your employer.
  • Schedule a meeting with your employer and an HR representative to discuss your condition and accommodations. Bring the letter and give it to your employer. This documentation is important to protect your rights under the ADA.

You must also make the decision of who to tell and how many people to tell. If you think it will be easier if your coworkers know about your diagnosis, it may be a good decision to share. If you think sharing your diagnosis will negatively impact your workday or professional relationships, you may want to disclose to the fewest number of people necessary.

Medically reviewed in January 2021.

Sources:
Disability Benefits Center. "Can I work with Lupus?"
American Academy of Family Physicians. "Patient Education: Lupus."
HealthGrades.com. "Talking to Your Employer and Coworkers About Lupus."
Lupus Foundation of America. "What you need to know about workplace accommodations."
Sheiresa Ngo. "How to Manage Work When You Have a Chronic Illness." Glassdoor.com. July 3, 2017.
Social Security Administration. "Disability Evaluation Under Social Security."
World Lupus Federation. "Lupus Knows No Boundaries e-Report."
Lupus Foundation of America. "Can I still work after my lupus diagnosis?"
HHS.edu. "Lupus and Employment Rights: Knowing Your Options."

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