Deciding When and How to Share Your Diagnosis with an Employer
If you live with lupus or another chronic illness, you know it often means navigating difficult decisions about disclosure to family, friends and even your employer. When one’s career is at the center of these conversations, it’s not uncommon to worry about how your employer will react, whether your job will be at risk, or how colleagues might perceive any accommodations you receive. All of these concerns are valid; deciding if, when, and how to share your diagnosis is a deeply personal choice, one with no universal right or wrong answer, only what works best for you and your specific situation.
I hope this article can help you navigate this tricky situation. We’ll cover:
Years ago, when I received an offer letter from one of America’s largest newsrooms, I had to pause and determine if I felt comfortable sharing information about my diagnosis and occasional challenges. Because I get ongoing IV treatments that would require a day off during the week, I knew I was going to need an accommodation, which would ultimately push me to disclose this information. But the first question I asked before making any decision was, are patients legally required to disclose an illness to their employer? And as I began contemplating this disclosure, I wondered exactly how much information did I have to disclose in order to get an accommodation? This kicked off a rabbit hole of research regarding the ADA, disabilities and employment.
In the United States, you are not legally required to disclose your diagnosis to your employer. Under the Americans with Disabilities Act (ADA), employers cannot ask you about your medical history or require you to disclose a disability unless it directly impacts your ability to perform your essential job functions.
That being said, if you need workplace accommodations due to your condition, you may need to share some level of medical information. This does not mean you have to disclose every detail about your diagnosis—only what is necessary to justify the accommodations you request. In my case, I sat down with the VP of the newsroom and explained I was planning on signing the offer agreement however, every two to three months, I would need to work from home and/or a treatment center because of the infusions I needed. I explained I would need two days hybrid during that time, and I also negotiated a partial hybrid work agreement overall because I knew going into the office Monday – Friday was unrealistic with my health. I did have to share certain aspects of my health struggles and why these infusions were necessary and the accommodations were granted. Had they not been granted, considering hybrid work did not impact my ability to get my job completed, I would have been able to fight this decision based on the laws of the ADA, which is created for these specific types of situations.
Understanding the ADA and Your Rights
So what exactly is the ADA? The ADA is a federal law that protects individuals with disabilities, including people living with lupus and other illnesses. It requires employers with 15 or more employees to provide reasonable accommodations that enable employees to perform their job duties without undue hardship on the business. In addition to accommodations, the law also prohibits workplace discrimination based on disability status.
Keep in mind, if you choose to request accommodations, your employer can ask for documentation from your healthcare provider. However, they cannot ask for a full medical history or deny you reasonable accommodations simply because you have lupus, or another chronic illness.
So you might be wondering what exactly is a reasonable accommodation?
Reasonable accommodations are adjustments that help individuals with disabilities perform their jobs more effectively. For those with lupus, here are a few examples of common accommodations:
A flexible work schedule or remote work options – (helpful when treatments and/or doctor appointments are necessary, or in cases where you don’t have the physical stamina to be in an office environment 40 hrs per week).
Ergonomic office equipment (such as a supportive chair or wrist rests) – (ideal for people with lupus, RA, etc. and deal with joint and/or muscle pain and inflammation.)
Adjustments to lighting to reduce sensitivity – (with UV light being a major symptom trigger for lupus patients, asking for fluorescent lighting or other UV radiating light to be replaced with a better option is reasonable.)
More frequent breaks to manage fatigue
Reassignment of physically demanding tasks
Permission to work in a temperature-controlled environment – (particularly helpful for those who have lupus, Sjogren’s, thyroid conditions, etc.)
Accommodations like these can significantly improve your ability to work while managing your symptoms, but requesting them may require some level of disclosure and explanation of how they can help you perform your duties to your employer.
Should You Share Your Diagnosis in Advance?
Another question you might be contemplating is when you share diagnosis information. I was diagnosed before this newsroom opportunity, so I went in very open about my needs and potential accommodations. Not everyone is in this situation, however. You may have been with your employer for some time and diagnosed recently. If you anticipate needing accommodations, consider discussing your health challenges before your symptoms significantly impact your performance. Proactively discussing your needs allows you to establish a plan with your employer rather than waiting until a crisis occurs.
However, if you do not currently require accommodations, you might consider keeping your diagnosis private for the time being. I’ve seen many people do this over the years for either their own personal preference, and even for fear of backlash from higher-ups or fellow colleagues. Every situation is unique. The decision should be based on your comfort level, job environment, and whether you trust your employer to handle the information professionally. Whatever you decide, know if you do share and are retaliated against, this is against the law and one of the way the ADA protects us.
Navigating Workplace Reactions
No matter how long you have lived with chronic illness, you know that people’s reactions to your diagnosis is basically a toss-up. One person may be empathetic and willing to work with your challenges while someone else doesn’t understand (or want to understand) and can make things even more challenging.
When it comes to work, one common concern is how colleagues might react if they perceive your accommodations as preferential treatment. While you are not obligated to share details about your health with coworkers, open and honest communication can sometimes help dispel misunderstandings.
If a colleague expresses frustration, you might say something like:
“I have a medical issue that requires certain accommodations so I can continue doing my job effectively. Thank you for your understanding.”
“Accommodations ensure everyone has the opportunity to succeed, just like ramps and elevators help people with mobility challenges.”
If tensions arise, it may be helpful to involve HR to facilitate a productive conversation and ensure workplace policies are upheld.
How to Approach the Conversation with Your Employer
If you decide to disclose your diagnosis to your supervisor or those in HR, preparation is key. Consider the following steps:
Know Your Rights – Research the ADA and any state-specific disability laws.
Decide What to Share – Remember, you do not need to disclose your full medical history. Instead, focus on how your condition impacts your ability to work and what accommodations you need.
Choose the Right Time and Setting – Schedule a private meeting with your employer and/or HR representative when you feel prepared.
Stay Professional and Solution-Oriented – Frame your discussion around how accommodations will help you remain productive and contribute to the company’s success.
Bring Documentation if Necessary – Your employer may require a note from your healthcare provider outlining your needs.
Deciding whether to disclose your lupus diagnosis at work is a personal choice, influenced by your job environment, health needs, and comfort level. While the ADA offers protections, workplace cultures vary, and it’s understandable to feel hesitant.
Ultimately, you deserve a work environment that supports your well-being. I have found, post-COVID and with the introduction of long-haul COVID symptoms in some people, work culture seems to be a bit more understanding when it comes to working remotely or having accommodations. Hopefully this trend of employers better understanding and helping all employees succeed continues. Whether you choose to disclose or not, knowing your rights and options can enable you to make the best decision for your career and health.
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About the Author:
Marisa Zeppieri is a former journalist, Mrs. New York 2015, author of the award-winning memoir, Chronically Fabulous, and the founder of global 501c3, LupusChick. Originally from New York, she currently calls the mountains of the Carolinas home, where she enjoys cooking, reading, and painting.
