Invisible Disabilities

Julia Beck's career was thriving when she nearly lost her life.

Thirty years ago, Beck was in her 20s and had just launched her first media consulting agency in McLean, Va. Her clients, ranging from restaurants to retailers, viewed her as a highly energetic and enthusiastic professional with a rock-solid reputation.

But then, Beck began experiencing bouts of fatigue and occasional confusion. Over time, her symptoms worsened. She had developed a near-fatal case of viral encephalitis that caused scarring on the right frontal lobe of her brain, ultimately leading to epilepsy and episodes of uncontrolled movements, sensations or behaviors.

Beck has been hesitant to say the word "seizures" aloud—she typically calls these experiences "episodes." She usually avoids using the term "epilepsy"—she prefers "the E-word"—due to the stigma associated with the condition, particularly in the workplace. For years, Beck was reluctant to disclose her condition to clients. "It has become easier for me over the past five years," she says. "Still, it isn't necessary to tell everyone."

Beck's disability has not hindered her career. She's the founder of the It's Working Project, which explores the intersection between caregivers and work. She develops strategies with the private sector for elevating caregiver support in the workplace, and she has written articles on the subject for Harvard Business Review, Bloomberg, The Washington Post and InStyle.

Beck is one of approximately 33 million adults in the U.S. with an invisible, or nonapparent, disability. These afflictions often don't manifest themselves in ways that are immediately evident to others. Some examples include autism, diabetes, traumatic brain injury, chronic pain, mental health conditions and Crohn's disease.

Marcie Lang, a social worker and psychologist in Silver Spring, Md., and author of Hidden Disabilities in the Workplace (Palmetto Publishing, 2021), explains that someone who has one of these chronic medical conditions may be considered to have a disability. Because the odds of being diagnosed with some invisible disabilities increase as people age, they are becoming more apparent as the average age of U.S. workers continues to rise.

"Expect hidden or nonobvious disabilities in the workplace to be the norm" in the future, Lang says.

Staying Hidden

Employees with nonapparent disabilities have historically faced discrimination in the workplace due to others inaccurately perceiving them as lazy, weak, antisocial, incompetent or aloof.

The Americans with Disabilities Act (ADA) characterizes a disability as any mental health or physical condition that causes considerable impairment while performing major life activities—such as walking, talking, writing, seeing or performing manual tasks. Many people with invisible disorders qualify for accommodations under the ADA but are nevertheless reluctant to disclose their conditions due to stigma.

In 2023, SHRM research revealed that nearly half (47 percent) of employees with invisible disabilities have not disclosed their conditions to their employers. The survey also found that:

• Workers with nonapparent disabilities believe that if they do reveal their conditions, their co-workers will scrutinize their behavior, think they are unable to fulfill their work responsibilities or talk about them behind their back.
• Workers with invisible disabilities are nearly twice as likely to feel frequently excluded at work (15 percent) compared to those without a nonapparent disability (8 percent).
• People who have disclosed their condition are two to three times more likely than their co-workers and supervisors to report experiencing incivility—including rudeness, disrespect or insensitive behavior.

Lang says people often do not disclose their disabilities at work because they don't trust their employers to treat them fairly. "There is a fear of retaliation, or not being selected for the optimal assignments, or being viewed as less competent than their co-workers," she says.

However, if a company encourages employees with invisible disabilities to ask for needed accommodations and demonstrates fair and equitable supervisory practices, those workers may be more willing to ask for the support they need, Lang says. Such support could include putting tasks in writing, offering flexible work schedules, installing adjustable lighting or obtaining ergonomic office furniture.

"Creating an accessible work environment and leading with accessibility in mind will benefit all employees," Lang explains. "It will also create a safe space for employees with nonapparent disabilities to ask for accommodations if needed."

She notes that companies must follow up on any statements they make about supporting employees with disabilities by actively meeting their needs. Doing so generally isn't expensive, Lang says.

"Most accommodations are administrative in nature," she says, "requiring a different way of leading people, assigning tasks in a different way."

Lived Experiences

Kara Yarnot lives with several nonapparent disabilities. Ocular melanoma, a rare cancer, caused the loss of her left eye, resulting in her need for an oversized computer monitor.

Yarnot also lives with Meniere's disease, an inner-ear disorder that has caused deafness in her right ear. Although her hearing aid helps, she still struggles in noisy environments such as open offices, trade shows and restaurants. But it's her chronic migraines that can incapacitate Yarnot for extended periods of time. "When my migraines are in full swing, I have limited function in [both bright and] low-light conditions," she says.

To alleviate her pain, Yarnot has hidden under her desk to avoid bright light, withdrawn into darkened conference rooms and sat in her car in low-lit parking lots. Despite this, she has been a top performer at work, achieving promotions and high performance ratings. But Yarnot says she still has been held back by past employers' inaccurate perceptions of her abilities.

"I raised my hand for a high-visibility special project that would have given my career a great boost," she recalls. "I was passed over for the assignment and was told they knew I would be great at it, but they couldn't be sure I would be at every meeting. Despite my continued excellent performance, I was not given any more opportunities for special assignments or promotions at that employer."

Ludmila Praslova, SHRM-SCP, is a professor of psychology at Vanguard University in Costa Mesa, Calif., who lives with autism, which makes her hypersensitive to sound and smell. Loud music in particular causes Praslova great discomfort, and certain aromas can make her physically sick.

While some colleagues have been considerate of her condition, others have weaponized it. A co-worker once threatened to play loud music if Praslova did not comply with a request. She has written about how employees who are neurodivergent are often bullied, exploited or underpaid.

Even managers who view themselves as progressive and supportive may excuse their employees who bully their colleagues with nonapparent disabilities through comments such as, "They did not mean that," or "But they're so nice," Praslova says. "A manager who I know would … insist on gaslighting me into doubting my lived experience," she says. "From their privileged position, my experience did not seem plausible."

How Can I Help?

Becky Greiner lives with expressive and receptive language disorder, a condition that creates deficiencies in speaking and retaining information.

"It's a challenge because my brain sometimes freezes when I'm trying to think of the next thing I want to say," she says. "Or I'll lose some details when people give me spoken instructions or information."

Greiner has a high-visibility role at a consulting company that requires consistent speaking, presenting and attending information-heavy meetings where she's expected to understand key takeaways and next steps. She also communicates with people around the world, so accents and language barriers are an added challenge. However, she says her company's leadership expects everyone to learn and communicate the same way, at the same level.

"It's exhausting to have to try and match extroverted, neurotypical styles that aren't your own and have to 'mask' to keep up," Greiner explains. "Managers know about it and they're supportive, but they still tend to get impatient with me sometimes."

Lang says building a more inclusive work environment and supporting employees with invisible disabilities should start with asking yourself a simple question: "How can I help?" This can launch a collaborative process for determining how to accommodate employees with disabilities. Starting this way can create a safe environment for employees to articulate their workplace challenges and the accommodations they need for optimal work performance.

Lang suggests some key ways employers can create more inclusive workplaces for employees with nonapparent disabilities:

• Educate your staff. By providing educational initiatives that teach your employees what invisible disabilities are and how they can affect the people who have them, you can increase the odds of your workers being more understanding, accommodating and supportive of their colleagues. Lang explains that things your employees are ignorant about can cause anxiety and avoidance of their colleagues. If people are taught about invisible disabilities, she says, the people who have them are less likely to be misunderstood or avoided.
• Leverage Employee Resource Groups (ERGs). Lang says that ERGs—groups within organizations that focus on mutual areas of interest or concern—are an effective way to create a supportive workplace culture for those with disabilities and to invite others to support them. The presence of ERGs can create awareness of disabilities in the workforce, enhancing a culture of acceptance, support and inclusion.
• Use inclusive language. Avoid using descriptors such as "normal" or "regular" when referring to employees who do not have a disability. For those with a nonapparent disability, these words can diminish their sense of belonging at work.
• Implement assistive technologies. Take advantage of technology that can support workers with nonapparent disabilities. For example, consider adding captions and alt text to videos, which can help employees who may have hearing difficulties. Providing written instruction can help others who have issues with retaining information.

"All employees will benefit from a welcoming workspace, and an employee with a hidden disability will feel safe and enabled to perform their work duties," Lang says.

Such measures can also attract promising employees who may be hesitant to apply elsewhere. "A potential employee will then see an inviting workspace that is easy to enter and comfortable to work in," she says.

A closer look at some common nonapparent disabilities and the potential workplace impact that may be involved with each. Autistic spectrum disorder. Autism spectrum disorder is a group of conditions that can cause challenges with social skills, repetitive behaviors, speech and nonverbal communication. Individuals with autism often struggle to find employment or to recognize social cues at work. Diabetes. Diabetes is a group of common endocrine diseases characterized by sustained high blood-sugar levels. Workers with diabetes may need adjustments to their work schedules, such as occasional breaks to check their blood sugar. Traumatic brain injury. Traumatic brain injuries can occur as a result of a severe sports injury, a car accident or a military-related incident such as combat. Such brain injuries can result in confusion, blurry vision and concentration difficulty, which can lead to trouble completing daily tasks. Dyslexia. Dyslexia is a learning disability that affects the capacity to either read or write. The condition can make it difficult to retain instructions, addresses and appointments. Employees with dyslexia may struggle to communicate clearly and succinctly to others through speech or writing. ADHD. Attention-deficit/hyperactivity disorder is characterized by excessive amounts of inattention, hyperactivity and impulsivity. Employees with ADHD may be easily distracted, have poor memory or have trouble managing their time. Mental health disorders. Anxiety, depression and other mental health disorders can diminish an employee's ability to enjoy their work and negatively impact their performance and attendance. Stressful work environments characterized by bullying, excessive workloads or job insecurity can pose a risk to the mental health of all employees. Crohn's disease. Crohn's disease is an inflammatory bowel disorder that can lead to abdominal pain, diarrhea, fever and weight loss. Workers with this condition may request certain workplace accommodations, including moving their workspace closer to restrooms or having flexible work arrangements to allow time to attend doctor appointments. Sensory processing disorder. Sensory processing disorder makes it difficult for a person to process and act upon information received through the senses. For example, working in a restaurant might cause a problem for someone with the condition due to the pervasive smell of food cooking. Working in areas of extreme temperatures, such as on roofs in the summertime, may also cause issues. —M.G.

Matt Gonzales is an online ­writer/­editor for SHRM who focuses on inclusion, equity and diversity.