When you have an autoimmune disease, especially if symptoms aren’t visible, you may feel like you’re keeping a secret. Chances are you’ve shared your diagnosis with your close friends or family, but talking about your health at work is a different dimension entirely.
“It is very personal to share your own physical issues and vulnerabilities with an employer and colleagues,” says Diane St. John, a Benaroya Research Institute at Virginia Mason board member and human resources professional who has celiac disease.
While federal laws provide workplace protection for people with autoimmune diseases, telling your boss or coworkers about your disease may still feel uncomfortable, and there’s no way to predict how they will react. Read on for advice and resources for how best to tackle those conversations so you can comfortably talk about your autoimmune disease at work.
1. Know when to disclose your disease
Whether you disclose your chronic illness with your employer or colleagues is ultimately up to you. Telling coworkers about your disease can help you build a support network. It can also be necessary when it affects your ability to perform at your professional best — for instance, if you need time away from work to manage your disease.
For St. John, disclosing her celiac disease wasn’t a choice. Managing the disease requires adhering to a strict diet, and she needs to be sure with regular lunch meetings and in-office meals her colleagues understood her dietary needs and the severity of her diagnosis.
But there are valid reasons to delay telling your employer about your chronic illness. Maybe you’re new to your job or you’re unsure how supportive your boss will be. Resources from the National Multiple Sclerosis Society, the Arthritis Foundation and the Crohn’s & Colitis Foundation can help people with autoimmune disease weigh the pros and cons of sharing their diagnosis at work.
2. Be prepared for varied responses
If you decide to talk about your disease, don’t expect your colleagues to understand or know exactly what you need right away.
“Consider that sharing your situation may have undesirable consequences,” St. John says.
People with more visible diseases, such as multiple sclerosis, or those that require active management may have to deal with misconceptions and prejudices about their competence and ability to handle stress. An employer could hold back opportunities, for example, because they assume you’re not capable, or they want to protect you from stress.
Be ready for varied reactions to your disease, and consider how you might handle these responses.
3. Know your rights and resources
Federal laws protect people with autoimmune diseases from on-the-job discrimination and allow for time off to manage disease, so it’s good to get familiar with these rights.
The Americans with Disabilities Act (ADA) covers impairments to “major life activity”— including the immune, endocrine, bowel and digestive systems. Under the ADA, employers cannot discriminate when it comes to hiring, promotions, job assignments, pay and all other employment practices.
If your autoimmune disease keeps you from being able to work, the Family and Medical Leave Act (FMLA) gives unpaid, job-protected leave that can either be taken once or intermittently. To qualify for FMLA, your employer must be covered (generally FMLA is for employers with 50 or more employees), and you need to be on the job for 12 months.
While the FMLA provides unpaid medical leave, the Washington Paid Family Medical Leave (WAPFML) program provides up to 16 weeks of paid, job-protected leave, including time off if you can’t work due to your illness. You’re required to have worked at least 820 hours for 12 months for a Washington employer to qualify.
You can always check with your workplace’s human resources manager if you’re not sure if your illness is covered under the ADA, FMLA or WAPFML.
Keep in mind that to qualify for ADA and FMLA benefits, you will need to disclose your medical condition with your employer. And while the law does not require your doctor to provide a specific diagnosis, your employer has the right to request additional information.
Resources like Job Accommodation Network (JAN), part of the U.S. Department of Labor’s Office of Disability Employment Policy, provide more information about disability laws, your rights and even templates on how to write an accommodation request to your employer.
4. Request accommodations
Under the ADA, you’re entitled to reasonable accommodations provided by your employer. However, the law doesn’t identify what specific accommodations are available for those with autoimmune diseases. For someone with rheumatoid arthritis, a reasonable accommodation may be a parking stall closer to the office entrance or a later start to the work day. For those with type 1 diabetes, reasonable accommodations may be more frequent breaks to take insulin or manage your blood sugar levels. A person with Crohn’s disease or colitis might request a desk closer to the restroom.
You may be able to work from home, take medical leave, request a part-time or modified work schedule, or seek changes to your workplace facilities to make them more accessible, according to JAN’s employee guide to requesting reasonable accommodations. For some accommodations, you might have to provide a doctor’s note.
As long as your request for accommodation doesn’t stop you from performing tasks and functions essential to your job, you can make any request that will make you feel more comfortable.
5. Advocate for yourself
The reality of dealing with an autoimmune disease at work is not everyone will understand what you’re going through. That’s why it’s important to be proactive, St. John advises. Keep an ongoing dialogue with your employer to ensure you’re doing what’s sustainable for you and the organization.
“Do not feel ashamed,” she advises. “Make sure you are getting your needs met.”
February 20, 2020
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This blog does not provide medical advice, nor is it a substitute
for professional medical advice, diagnosis or treatment.