Once upon a time, I had a high-level job at a national magazine. I was up for a promotion to editor-in-chief and was invited to lunch with the company’s VP. He was a tall guy with legs as long as a giraffe’s and walked at warp speed.
He didn’t know that I have rheumatoid arthritis (RA), which causes me debilitating foot pain. I’d disclosed it to my immediate supervisor right after I was diagnosed because I was unsure how my new medications would affect me. But for privacy reasons, she was the only person I’d told at work.
As the VP and I hustled to the restaurant, I trailed behind. Reluctantly and politely, I asked him to slow down. He actually seemed annoyed, and I instantly felt judged and weak.
I didn’t get the job.
Did my invisible disability kill my chances for the promotion or was I just an untalented hack? We may never know. What I do know for sure is that I am not the only one who’s ever felt that my disability has negatively affected me at work. Invisible disabilities include a wide range of conditions, such as fibromyalgia, ADHD, Lupus, PTSD, OCD, HIV, depression, and more. And while it’s difficult to pinpoint exactly how many people fall into this category, workers with invisible disabilities face unique challenges compared to those with visible ones when it comes to disclosure, according to a paper published in the Journal of Industrial and Organizational Psychology.
“We think of health as the norm in our culture, but it’s really a fantasy that everybody in the workforce is in perfect health,” says Katie Willard Virant, a psychotherapist in St. Louis who has Crohn’s disease and is the author of the Psychology Today blog Chronically Me: The Emotional Landscape of Chronic Illness. “There are many people struggling with chronic illness. We need to normalize it more.”
Understandably, Willard Virant says, employees with invisible disabilities are confused about when—or if—they should disclose their illness at work. They’re scared to tell their bosses and co-workers about their conditions for fear of being outcast at best and fired at worst. “There are feelings of shame, embarrassment, vulnerability, paranoia. Disclosing your illness can make you feel isolated and less valuable.”
Before you do anything, read these five important steps to make the best decision for you and, if you do decide to disclose, to figure out the best way to go about it.
Step 1: Decide If You Actually Want to Disclose It
According to the Americans with Disabilities Act, “the law says that you can disclose or not disclose at any time,” explains Claudia Center, senior staff attorney with the national ACLU disability rights program. “Most people do not disclose during the application process itself.” But some will because they want to know upfront if the company will be accepting and supportive—or not. “Some people do because they’ve had bad experiences in the past and they just want to be open and just throw it all out there,” Center says. “Or some people might have disability pride, like, ‘I'm proud of who I am as a person with a disability.’”
Potential employers are not allowed to ask you specific medical questions, get into anything designed to elicit medical information, or make inquiries about a potential disability during an interview. They can’t ask what medications you’re on or how many days you missed on your last job because of worker’s comp claims.
But they can ask you, for example, if you are able to do the task. “That’s never going to be illegal,” Center says. They can also ask why you have a years-long gap on your resume. “Absolutely do not lie,” Center says, “but you can be creative about your answer. Figure out something that you did during that gap. Maybe you were too sick to work during that time, but you were in a class or doing some volunteer work, then you could list that on your resume or speak about it during the interview. Or perhaps you were taking care of a sick parent,” she says. “You can say, ‘I was helping a family member during that time and you know, I was lucky enough that I didn't have to work.’”
The decision to disclose isn’t easy at any time, whether it’s during the interview process, after being hired, or down the road during your employment. If you’re unsure what to do, think about why you would choose to disclose and what outcome you’d hope for. Are you disclosing because you want to make sure you’ve had an initial conversation in case your condition worsens? Or are you suddenly in pain and can’t do your job effectively? “Different people have different privacy values,” Center adds. Choices about if, when, and how to disclose—and the reasons behind them—vary based on the person and their particular situation.
Gabi DeLorenzo, who is on her feet eight hours a day working at a truck stop, decided to tell her employer everything about her psoriatic arthritis, an autoimmune disease, at her interview so there would be no surprises if she got the job. Luckily, her boss was immediately supportive. “I was hired on the spot and came back the same day for training.”
Kai Hibbard, a social worker who has ADHD, blurted it out during a court appearance one day when she felt it was affecting a presentation. “I told a room full of people all at once, including attorneys, the magistrate, the head of family recovery court, other social workers, the head attorney for Child Protective Services, and other human services contractors,” says Hibbard, who hadn’t gone in that morning thinking she would talk about her ADHD. “I was giving a case report and realized I kept jumping from topic to topic. Think Doug in Up: ‘Squirrel!’ I stopped, took a breath and let them know I had ADHD and had forgotten my meds that morning.”
David Iserson, a television and film writer/producer who is constantly working on new projects with new people, would prefer to never disclose his Crohn’s disease, “but it often becomes necessary. I need to explain why I obviously have to duck out to the bathroom more than most people,” he says. “I’ve tried to not say anything and then had a boss lecture me on not drinking as much water, so I wouldn’t have to go as often. And that was embarrassing. It’s very hard.” Ironically, Iserson says, his invisible disease makes him very visible in a way he’d rather not be. He tends to land in the hospital for a week or so every couple of years. “You definitely are branded as a sick person and everyone at work signs a card. Which I hate.”
Others hold off disclosing for as long as possible. “I want to be considered for promotions,” says Mandy C., who works for her state government. “I know that legally they can't hold your illness against you, but I live in the real world, and they hold it against you. So the longer they are in the dark, the better.”
Most employees wait until they've been on the job for a while and “try to get relationships going with their co-workers and supervisors and have that goodwill in place” before they disclose, Center adds. But if you’re having trouble performing certain functions and people are noticing—maybe you’re even getting written up—“we advise you to disclose so at least there's an attempt to accommodate you before you lose your job.”
Step 2: Know Your Legal Rights
Before you disclose—if you choose to at all—it’s imperative to know whether or not your specific invisible illness is covered and what that even means. The good news is that in 2008, Congress passed amendments to the ADA revising the definition of what constitutes a “disability,” intentionally broadening it to include those of us who may look “healthy” on the outside but are suffering on the inside. “The ADA does not contain a list of medical conditions that constitute disabilities,” explains Center. “Instead, the ADA has a general definition of disability that each person must meet.”
According to the Job Accommodation Network, the general litmus test to figure out if you’re covered under the ADA is:
- Do you have an impairment? If yes,
- Does it affect a major life activity (such as work)? If yes,
- Does it substantially limit the major life activity?
You cannot be fired for having an invisible illness covered under the ADA—but you have to be able to do the job you were hired to do. If you can’t, your employer is required to make “reasonable accommodations” to help you succeed in your job (see Step 5 below) or find you a lateral move within the company to a vacant job you’re qualified for, Center notes. If there’s no open role at an equivalent level, they are allowed to demote you to another open position.
Charlotte H., for example, had been at her job at an engineering firm for almost a decade when she suddenly and rapidly started developing symptoms of ankylosing spondylitis (AS), a type of arthritis that causes excruciating back pain. “I actually ended up getting a demotion, though they called it a lateral move, due to needing to work from home,” she says.
If neither a lateral move nor a demotion is possible or it doesn’t work out, a company may be legally allowed to let you go.
Step 3: Choose Whom to Disclose To
By law, you are allowed to only tell HR, if you prefer. You can inform your boss or supervisor as well, but you aren’t legally required to. In other words, that part is entirely up to you and might depend on your manager and the specifics of your situation.
“I have chosen to be very open about my circumstances with my boss in an effort to have [fewer] issues,” says AS patient Sara Bertram. “I always feel it’s easier to understand someone else’s situation if you know a little more about what’s going on. They have been really great about it. I will say though, that I could see where some places I maybe wouldn’t do that in fear of negative responses.”
Because not everybody gets a warm and fuzzy reaction. “I was open about the journey I went through to get a diagnosis. It sucked,” says Charlotte. “My bosses weren’t really supportive but I get why. People think illnesses are black and white. That you go to the doctor and write you a script and you’re fixed. That isn’t the case with systemic autoimmune disease.”
You can also disclose to your co-workers but that can, in some cases, trigger nasty gossip or cause resentment if they feel you get special treatment or have to pick up the slack for you. “I felt like I was letting everyone down,” admits certified athletic trainer Cheryl W. “I missed 30 hours of work last year and after eight years of glowing reviews it didn’t matter anymore. I still got chastised and my supervisor suggested I drop hours. I said no.”
But there can also be a cost to hiding your disability from your colleagues. “If you’re keeping something secret, that can be kind of weird and make people have anxiety and not feel comfortable,” Center says. “Some people do something in between. They might disclose to their close friends at work, but not to everybody.” If you don’t want everyone to know, make sure to ask those you do tell to keep the information private.
If you decide to disclose, Willard Virant recommends finding allies in the workplace. “[Make] sure that you have those people, your tribe, that you can talk to about these feelings,” Willard Virant says. “People that you can go to and say, ‘Well, you know, this just happened. This was tough.’ I think knowing that you have those safe people is super important.”
Mary Hommel, who has psoriatic arthritis, found an ally in her supervisor. “It took me a year to tell my boss but I’m glad I finally did,” Hommel says. “When people would say stuff he’d defend me. He’d even scold me when he knew I was overdoing it.”
Step 4: Draft an Email
Disclosing your invisible illness is perhaps as nerve-racking as asking for a raise. Center recommends sending some sort of official correspondence for the record. The JAN website is an amazing resource for all things related to disclosing your disability and has sample form letters for many different kinds of disabilities that you can use as a guide. In a nutshell, JAN says, your letter should:
- Identify yourself as a person with a disability
- Say that you’re requesting accommodations under the ADA (if you’re a federal employee, you’ll want to cite the Rehabilitation Act of 1973 instead)
- Describe the specific job tasks that are problematic
- Describe your ideas for accommodations
- Ask for your employer’s input on accommodation options
- Attached medical documentation if relevant
- Ask for a timely response to your request
“I have been routinely informing my employers for about ten years,” says Mark McIntyre. “Each time I change jobs or get a new boss, I have a one-to-one and explain about my condition and what it means for my work capability. I follow it up with a standard email confirming what I have said so they have a record.” You can start with a meeting, as McIntyre does, or skip straight to the email, depending on your comfort level.
Step 5: Ask for “Reasonable Accomodations”
If you want to request accommodations—a lateral move, a standing desk, an ergonomic chair, schedule modifications, time off for infusions or other appointments, work from home days, etc.—“your employer is permitted to ask you for reasonable medical documentation, which generally speaking is a note from your doctor confirming that you have a disability covered by the act and that you need an accommodation,” Center explains.
Karen Schlosberg, a proofreader/copy editor, has several invisible illnesses including Lyme disease, ADHD, IBS, and depression. “My work became erratic. The brain fog was the worst. My memory was full of holes and I had trouble finding words. I had trouble organizing and reading instructions,” Schlosberg says. “I disclosed that I had ADHD and I needed a bigger monitor and some adjustment in the proofreading protocol. I have mixed feelings about asking for accommodations but ultimately if it comes down to getting a bad review or asking for accommodations, I’d say ask.”
Willard Virant suggests not just presenting your employer with a problem but bringing them potential solutions as well. It shows your employer you’re being proactive but it’s also “a way to empower yourself,” she says. At the same time, be open to other ideas your employer proposes. There may be solutions that you’re not aware of or ones you can brainstorm together.
Kathy Carbrey, a supervisor at a billing company, has had a very positive experience since disclosing she has AS. “It’s imperative for me to be in the office due to having staff under me,” she says. But her company set up a computer for her at home so she could work remotely on days she isn’t feeling well. “My bosses have also been very understanding with the multiple doctor appointments and physical therapy twice a week,” she adds, and “my immediate boss has taken the time to learn about AS and how it affects my daily life.”
Unfortunately, not all companies respond as Carbrey’s did. If you have a dispute with your employer around what falls under “reasonable accommodations”—which is open to interpretation and varies widely depending on the state, the size of the company, and more—or are receiving bad performance reviews you feel aren’t warranted, contact a local legal clinic or the JAN.
Disclosing an invisible illness at work is difficult and can crush your confidence in your abilities. Whatever you decide to do and however you decide to go about it, it’s essential to remember that just because you have a disability, it doesn’t mean you’re not good at your job. Remind yourself of that often.
“Remind yourself of the strengths that you do bring to the workforce, some of which are because of your chronic illness, like courage and empathy. There are certainly negatives and drawbacks, but there are strengths, also. We have to own those,” Willard Virant says. “Reclaim your strength and what you bring to the workplace, like your intelligence, your hard work, and your training. Know that you bring something of value—and that your illness doesn't diminish that.”