What You Need to Consider Before Disclosing an Invisible Illness to Your Employer

When Alexis* goes to her office and gets to work, there’s often more on her mind than just the task at hand. Thanks to her rheumatoid arthritis and peripheral neuropathy symptoms, sometimes she needs accommodations to help her be successful at her job, like time off to go to doctor’s appointments or the ability to stay home during a bad flare-up. But because her illnesses are invisible, no one at work will come to her and ask what accommodations she needs to be successful. She has to decide if, when and how to reveal her health challenges to her employer.

The prospect of disclosing such personal information, without knowing if you’ll get support in return, can be scary and confusing.

“[I wonder], will this keep my employer from considering me for good job opportunities,” Alexis told The Mighty. “Will someone decide I can’t do something without consulting me about it? Will people think I am just making an excuse for being absent from work when the pain is too much?”

Anyone living with a chronic illness or disability has to figure out what accommodations (if any) they need from their workplace in order to do their job effectively and without compromising their health. But when your illness is invisible, and you have to choose if and how to tell your supervisor about your health needs, you may not know exactly how to approach that conversation. Going in with a plan of attack can make the whole process easier. Keep reading for some important considerations to make before starting a conversation with your workplace.

Your Legal Protections

Before telling anyone at work about your disability, make sure you know how your company is required, legally, to respond to your disclosure. If you live in the United States and work for an employer that has 15 or more employees, you are protected under the Americans With Disabilities Act, in addition to any state laws that may apply (which override the ADA if they provide greater rights). Under the ADA, employers must provide reasonable accommodations — in other words, changes to the way the employee does their work that allow them to perform the essential functions of their job — to employees with a disability.

If you live outside the U.S., you may have specific laws that dictate the protections you are afforded at work. Be sure you understand them before disclosing your disability.

Linda Batiste, principal consultant at the Job Accommodation Network, which is funded by the U.S. Department of Labor’s Office of Disability Employment Policy and provides guidance about workplace accommodations, told The Mighty that when an employee discloses a disability to their current employer, the employee must first clarify why the disclosure is being made. Some employees just want their employers to be aware of their disability, but don’t need anything at the time of the disclosure, Batiste explained.

“When this happens, the employer should document the disclosure in a confidential way, but nothing else likely needs to be done,” Batiste said.

However, if an employee says they disclosed because they need an accommodation, the employer should begin working with the employee to come up with an effective accommodation, Batiste said. The employer might ask the employee to fill out paperwork or request medical documentation to verify the disability and need for accommodations.

In the job interview stage, the company should not require you to disclose a disability, though some employers will give you the opportunity to voluntarily disclose your disability (possibly because they have policies in place that incentivize them to hire people with disabilities). You’re not obligated to tell a potential employer about your disability in an interview, though you can if you want. Employers must also provide reasonable accommodations for the application process itself, if necessary. If you need accommodations in order to apply for the job, you should ask.

If you have received a job offer and are considering whether you should tell your potential-future-boss about your disability, know that any information about a disability revealed during the post-offer stage of employment cannot be used to rescind a job offer unless the information reveals that the would-be employee could not perform the essential functions of the job with or without accommodations.

Deciding Whether or Not to Disclose

If every employer responded to an employee’s disability disclosure with complete and utter acceptance and a quick approval of accommodations, it’d be easier to decide whether or not you need to disclose! But as many people with invisible disabilities have discovered, employers don’t always respond in the most supportive manner. Employees are left weighing the pros and cons of disclosing: the possibility that you’ll get accommodations that will make your job easier vs. the possibility of being met with suspicion, insufficient accommodations, or your boss and coworkers changing how they treat you.

Every person’s situation is unique. There’s no one-size-fits-all answer for whether or not you should disclose an invisible disability at work. It’s up to you to weigh your health needs with the requirements of your job, workplace culture, and supportiveness of your boss and human resources department. Just remember: it’s your responsibility as the employee to start the accommodation process.

“If the employee doesn’t initiate the conversation, then in most cases the employer won’t have a duty to provide an accommodation,” Batiste said.

Jennifer Bell, who has worked in retail management and in public sector roles while living with chronic fatigue syndrome and migraine, told The Mighty when she is applying for a job, she worries she’ll be rejected if she discloses her disability, especially if employers see gaps in employment on her resume. Even when she’s thinking about disclosing while in an existing job, it can be scary not knowing exactly how her employer will react.

However, if you have a great boss, you may have less to worry about than you think. Bell said she’s disclosed to bosses who worked with her to come up with a plan and made it clear her contribution to the company was worth the trade-offs. For her, disclosures that turned negative often occurred when she disclosed early and without knowing everyone involved.

“If you know your boss quite well and have a good existing relationship, that’s a really good basis for feeling like you can disclose,” Bell said.

Liz Allen, a lawyer, public policy strategist and speaker who lives with Lyme disease and co-infections, told The Mighty while she’s had good experiences disclosing to an employer (including one that led to the ability to order lunch every day from a restaurant that offers autoimmune paleo-friendly food), she’s also had some negative experiences. She said these typically go hand-in-hand with being exhausted, in pain, unsure of what she really needs, and walking into the conversation without confidence, in addition to a boss who wasn’t open to certain accommodations.

“Mostly [negative disclosure experiences] involve me crying because I’m so emotionally stressed and don’t think I deserve the accommodation, and also I don’t actually ask for what I need, but rather less than what I need,” Allen said.

How to Help the Disclosure Go Smoothly

So, you’ve decided you want to tell your boss about your disability. Keep these tips in mind before starting the process:

1. Be prepared. Before starting a conversation, Batiste recommended thinking through why you’re disclosing, how much information you want to share, who you are going to disclose it to, and how you’re going to disclose. She suggested putting your request in writing, so you can control exactly how the disclosure is made and what you say.
2. Don’t give too much detail that isn’t relevant to the workplace. “Employers just need enough information to verify that an employee has a disability and to understand why an accommodation is needed,” Batiste said.
3. If you’re in the interview stage, use this time to interview them, and get a sense of how accommodating they might be. Consider asking what experience they have working with employees with health issues and how they’ve put plans in place to help them succeed. “Someone who really understands this will have success stories to share or will seem like it’s something they really want to make progress on,” Bell said. If they don’t seem interested in accommodating people with disabilities, perhaps this isn’t a company you want to work for.
4. If you can, wait to tell people about your disability until you’ve gotten to know them and they’ve gotten to know you and your work ethic. “Not everyone is going to be understanding or supportive, especially if they assume you’re going to cause more work for them or be unreliable when they need you,” Alexis said. If you wait until you are well-acquainted with your boss and coworkers, you might be better able to anticipate how they’ll respond and what accommodations to ask for. However, don’t wait so long that your work begins to suffer. 
5. Go to your boss with an idea of the accommodations you need. “Sit down and write a plan for yourself, come up with ideas for what would help and also what’s in it for them? Remind them of the benefits to the workplace of this plan/added flexibility,” Bell advised. “They might not adopt your plan word for word, but you can give them a really good starting point.”
6. Be prepared for your boss to ask you follow-up questions. “If your boss had no idea you have a disability, he or she might be surprised and might have some questions,” Batiste said. Employers are allowed to ask only relevant questions, such as medical documentation, your functional limitations, your accommodation ideas and whether other options might work.
7. Consider telling your coworkers, too. “You will normally not be forced to disclose to your peers, but it can breed distrust if they see you getting flexibility that they aren’t,” Bell pointed out. “So have a think about how you want to have those conversations, if at all, and make sure your manager is clear on your wishes.”
8. Document everything. Once the disclosure is finished, Alexis suggested documenting evidence of the quality of your work, as well as any conversations you have in which you feel your employer is linking your condition to a decline in your performance or to their decision to not give you opportunities, promotions, etc. You will need this documentation if you ever need to take legal action against the employer for not providing the accommodations you require.  

If nothing else, remember this: You deserve to work in an environment in which your disability is accommodated and supported. Allen said:

You deserve to be accommodated. Believe that. Know that. Internalize that. Go in confidently. You have legal protection and you deserve to be on a level playing field with your peers. Your company wants you to do your best work, the accommodations merely help you do that. Ask. Ask. Ask.

* name has been changed