Should I Tell My Employer About My Autoimmune Condition?

Holly Bertone, CNHP, PMP

This article is shared by Holly Bertone, CNHP, PMP, President of Pink Fortitude, and author of the #1 Amazon bestselling book, Thriving in the Workplace with Autoimmune Disease: Know Your Rights, Resolve Conflict, and Reduce Stress.

Should you notify your employer about your AI condition and disability? Unfortunately, we don’t have a crystal ball to help us figure out the correct answer. I’m going to run through several scenarios that will help you to think through your answer, but the only one who can answer this question is you.

According to Tracie DeFreitas, MS, CLMS, Lead Consultant, ADA Specialist at the Job Accommodation Network (JAN), “Deciding if, when, and how to share disability-related information with a prospective or current employer can be overwhelming.”

DeFreitas continues, “The decision-making process requires answering a number of personal questions that may be different in each employment experience. There is no single right or wrong approach to disclosing information about your medical impairment. The process can include questions like: ‘Do I have an obligation to disclose?’ ‘When is the right time?’ ‘How much information does the employer need?’ and ‘How will disclosing the information affect my employment?’

“Generally there is no obligation to disclose disability-related information to an employer until the need for reasonable accommodation becomes apparent. Disability disclosure can occur during any stage of the employment process, including pre-employment, post-offer, and while employed – whether it be within days, months, or years of initially being hired. Generally it is up to the individual with the disability to determine the right time to disclose, given their particular circumstances.

“Why disclose? Individuals will usually disclose their medical impairment when it becomes apparent that an accommodation is needed to perform essential job duties, to receive benefits or privileges of employment, or to explain an unusual circumstance, such as, when there is a disability-related performance issue, or when an individual is behaving in an unusual manner. The need to disclose or request accommodation will become evident when an individual knows there is a workplace barrier related to their medical impairment.”

According to the Department of Labor, “The laws require that qualified applicants and employees with disabilities be provided with reasonable accommodations. Yet, in order to benefit from the ADA and the Rehabilitation Act, you must disclose your disability. An employer is only required to provide work-related accommodations if you disclose your disability to the appropriate individuals.”

Keep in mind that once the information is out about your disability, you can’t put the toothpaste back into the tube.  It seems like life these days isn’t meant for secrets. If your co-workers know about your condition, even if they are trusted in discretion, what happens if they inadvertently say something while the boss is in listening distance? Are you posting about your illness on social media?  Even if you decide not to tell your employer, there are no guarantees that they won’t find out.

Individuals with AI are in a unique position as most of our symptoms are invisible. No one can see how much you are suffering, and unless you say something, they will never be aware. What if you are having bouts of extreme fatigue or cognition issues? It is possible that your work may be affected. Would you prefer to get written up for your work performance? Or disclose? Because most AI conditions and symptoms are invisible, what if your employer or manager doesn’t believe you? What if your co-workers think you are just being lazy or making excuses for not working hard?

Let’s say you decide not to tell your employer because you fear it will compromise your job. If your manager finds out, and they are not legally allowed to say anything to you. But now, all of a sudden, they may be doing little things to make your life miserable. Your work comes back extra scrutinized. You now have to account for your time in and out of the office on every single break. If you feel they are discriminating against you because of your disability, you have no documentation and nothing to prove your case.

According to the Department of Labor, as a person with a disability, you have these protections and responsibilities when it comes to disclosure:

You are entitled to:

  • Have information about your disability treated confidentially and respectfully
  • Seek information about hiring practices from any organization
  • Choose to disclose your disability at any time during the employment process
  • Receive reasonable accommodations for an interview
  • Be considered for a position based on your skill and merit
  • Have respectful questioning about your disability for the purpose of determining whether you need accommodations and if so, what kind.

You have the responsibility to:

  • Disclose your need for any work-related reasonable accommodations
  • Bring your skills and merits to the table
  • Be truthful, self-determined, and proactive.

JAN offers some additional tips to keep in mind:

  • The timing of a request can be rather important. It’s not necessary to disclose a disability if sharing the information will have no impact on the employment situation. If an accommodation is not needed, it’s probably not necessary to disclose a hidden disability that will have no impact on job performance.
  • While early disclosure may not be necessary, it is suggested that individuals disclose their medical impairment and request accommodation before job performance suffers or conduct problems occur. According to the EEOC, an employer does not have to rescind discipline (including a termination) or an evaluation warranted by poor performance simply because an employee has disclosed a disability or requested accommodation (EEOC, 2008).
  • JAN offers a number of resources related to the topic of disability disclosure. To learn more, visit Accommodation Information by Topic: A to Z: Disclosure.

The #1 Amazon bestseller, Managing Your Autoimmune Condition in the Workplace is the first book ever to educate individuals specifically with autoimmune disease on their legal and disability rights in the workplace. The book was born out of author Holly Bertone’s personal and painful experience and lack of resources available specifically for individuals with autoimmune diseases. She walks you through the basics of navigating FMLA, EEO, reasonable accommodations, working with your boss, and then provides much needed resources to help you find that critical balance between taking care of your health and managing your symptoms at work.

Holly Bertone, CNHP, PMP, is a best selling author, and health entrepreneur. She is the President and CEO of Pink Fortitude, LLC and runs the health and wellness website Holly is a breast cancer and Hashimoto’s survivor and turned these two significant health challenges into a passion to help others. She inspires others with her quick wit, brutal honesty, and simple ways to be healthy in real life. You can follow her on social media: @pinkfortitude