As someone who has been living and working with an invisible disability for a decade, raising awareness for how to support people with an invisible disability in the workplace has long been a passion of mine. But this year, as I think about National Disabilities Awareness Month, the importance of this topic feels personal in a new way.
Living with an Invisible Disability
A lifelong friend recently became a COVID-19 long-hauler. COVID long-haulers, or people with post-COVID-19 condition, have symptoms such as fatigue, shortness of breath, and cognitive problems that develop shortly after becoming ill from COVID-19. These symptoms, which tend to vary greatly from person to person, can last for months or years and can be debilitating.
Six months ago, my friend was a hardworking professional, passionate about her career, loving her life, and using her free time to serve her community. Now, she spends most of the day in bed. Things most of us wouldn’t think twice about—a trip up and down the stairs, doing the dishes, cutting up vegetables for dinner—have to be carefully paced. If they’re not, she’ll experience a crash in energy that can last for days.
Because my friend and I live far from one another, I only recently saw her in person for the first time since she became a COVID long-hauler. From what she described in our phone conversations, I expected to be greeted by a frail, sickly person when I arrived at her door. To my surprise, I got an enthusiastic hug and a cheerful greeting from—by outward appearances—a healthy, vibrant woman.
What was happening? Was she faking it? Had she been exaggerating her symptoms?
In the following days, I would make sense of the apparent disconnect. Invisible illnesses like hers often feature a rollercoaster of good and bad days. She can also mask or push through her symptoms for short periods of time, knowing that she’ll pay for it later with a crash. And some of her symptoms are simply not discernable from the outside, leaving others unsure of how sick she really is.
This is the life of someone with an invisible disability.
What Is an Invisible Disability?
An invisible disability is an umbrella term for any condition—physical, mental, or neurological—that affects someone’s ability to perform daily life activities but is not apparent from the outside. The Invisible Disabilities Association uses the term to refer to “symptoms such as debilitating pain, fatigue, dizziness, cognitive dysfunctions, brain injuries, learning differences, and mental health disorders, as well as hearing and vision impairments.”
The Hidden Challenges of Invisible Disabilities
Due to the hidden nature of these conditions, people living with invisible disabilities grapple with a different set of challenges in the workplace than those whose disabilities are more apparent.
One is the consideration of how and when to disclose their invisible disability. Some workers choose to keep their conditions a secret. This may be out of concerns of employment discrimination, a desire to fit in and appear “normal,” or a fear of not being believed.
And the fear of not being believed is a big one. Many people with invisible disabilities have the experience of not being believed by teachers, family members, and even medical professionals until an accurate diagnosis is established. So, many of us are primed from a young age to expect others to not understand or minimize our experience.
And even after being diagnosed, people with invisible disabilities often struggle to be understood. For example, I have two co-occurring sleep disorders that, even with treatment, make getting more than four to five hours of sleep per night difficult. I find myself constantly educating and reeducating even my closest friends and family members about my condition. I get it: it’s complicated, and it’s unique enough that most people (including some of my physicians) have little to no experience with it.
Many invisible disabilities also suffer from misperceptions created by poorly rendered media portrayals that lack nuance and accuracy. For example, a person whose Autism has a less obvious presentation may struggle to help others understand the validity of their diagnosis. This is especially difficult when the only idea others have of Autism is based on stereotypes, like being a savant with a superhuman memory and obsessive interests but having extremely limited communication skills.
What Leaders Need to Know About Invisible Disabilities in the Workplace
If an employee discloses an invisible disability to you, they may be seeking a formal accommodation to better perform their job responsibilities. Or, they may simply want you to know about their limitations and lived experiences so you can better understand where they’re coming from.
In either case, this disclosure creates a vulnerable moment. While understanding how to work with the employee and HR to provide necessary accommodations is important, so too is how you navigate the human side of the interaction.
What you do from this point forward as a leader or colleague will have a tremendous impact on this person’s sense of belonging, esteem, and security.
5 Things Leaders Can Do to Be a Better Ally
At DDI, we teach leaders five Key Principles—essential interpersonal skills necessary for building social bonds. These power skills provide a great framework for being an ally to someone with an invisible disability.
1. Maintaining or enhancing self-esteem.
Since the concern about not being believed is such a strong one, it’s important that when someone with an invisible disability talks about their experience, you take their word for it. One of the greatest gifts you can give to someone with an invisible disability is viewing them as a trustworthy narrator of their own experience. You may not fully “get it” at first, but don’t verbalize any doubts you have. Give yourself time to become educated about the person’s condition. Show an appropriate level of curiosity to try to understand where they’re coming from.
Another way to maintain self-esteem is to make sure the employee knows that their disclosure to you is safe and they are still valued. It’s common for people with invisible disabilities to have thoughts like “When will people stop being so understanding about my limitations?” or “When will people realize I’m not actually doing what they expect of me?”
You can help to address these fears by letting them know they are a valued contributor. Also, let them know that you’re invested in working with them to figure out ways of accommodating their needs and helping them do their best work.
2. Listening and responding with empathy.
Let’s start with the “listen” part. You cannot empathize with something you do not understand. It’s so important to truly listen when someone is explaining their invisible disability and its impact on their work.
Ask appropriate follow-up questions so you can better understand what they’re describing. You’d be surprised how rare of a response this is when disclosing an invisible disability—and how affirming it can be when you do it.
When empathizing, it’s crucial to avoid sympathy or pity. Empathy is about creating connection—about feeling with the other person. Pitying responses like “that must be terrible!” or “I don’t know how you manage” create emotional distance and prevent connection. These types of responses often unintentionally compel the other person to comfort you with statements like, “Oh, it’s really not that bad,” or “You don’t need to be worried about me.”
3. Sharing thoughts, feelings, and rationale to build trust.
One way to create connection is to appropriately disclose relevant personal information that helps the employee feel understood. If you demonstrate vulnerability by sharing a personal experience you’ve had related to the person’s disability, you can create both trust and a sense of being seen.
The point of your disclosure should be to show that you understand the condition generally and the impact it can have on someone. Proper disclosure shows that you care about this condition because it’s impacted someone important to you.
The big caveat here is to avoid sharing your experience in a way that invalidates the other person. When done with less care, this can turn into one-upmanship or take the point of focus away from the other person. It can also have the effect of making the other person feel less seen (if the experience you disclose isn’t as similar to theirs as you think).
For example, if a coworker shares they are struggling at work because of ADHD symptoms, you wouldn’t want to say, “My partner has ADHD, so I understand what you’re going through.” A better response would be, “I understand that ADHD makes work tough. My partner deals with that as well. But I’d be curious to learn more about how it affects you.”
4. Providing support without removing responsibility to build a sense of ownership.
Do you want to support your colleague but don’t know how? What a great time to ask them! Some invisible disabilities don’t require formal accommodation but simply a flexible and supportive environment. Ask the other person what their needs are and how you can help remove barriers for them.
My invisible disability affects my daily energy levels in a predictable way. I manage this by blocking off time in the early morning for focused solo work. I typically use the time from mid-morning through mid-afternoon for meetings and leave easier tasks for the end of the day.
My colleagues have accommodated me in ways that make this not feel like a big deal. They avoid scheduling high-stakes meetings later in the day and are flexible to the fact that something I said I’d deliver by the end of the day might actually take until the following morning if I’ve unexpectedly depleted my energy and attention reserves that day.
I recognize that having such a flexible schedule under one’s personal control is a privilege not everyone has. People with invisible disabilities whose roles provide less autonomy will tend to need more support in order to get their needs accommodated.
The pitfall to avoid when providing support is simply removing responsibility or making assumptions about what the person can’t do. It quickly becomes alienating when others start treating you as fragile. This leads you to feel like you’re no longer a valued member of the team. And it can be particularly hurtful if some of the responsibility that is removed is something you cared deeply about. It’s always better to ask than to assume.
5. Asking for help and encouraging involvement.
While I already mentioned how important it is to ask your colleague how you can support them, it’s important to keep asking. Follow up regularly in one-on-one meetings to see how things are going once they’ve disclosed their invisible disability. Be specific about asking how accommodations are working or not working. Also, ask how they’re feeling and what adjustments need to be made.
Remember that as the leader of someone with an invisible disability, you do not have to have all the answers. You can reach out to your HR team for guidance, being careful to keep appropriate confidentiality. Additionally, your employer’s employee assistance program (EAP) could be a good resource for you to go to for advice on how to handle accommodations.
A More Inclusive Workplace for Everyone
Being mindful of the inclusion of people with invisible disabilities creates a more accessible and inclusive workplace for everyone. Leaders should think about how they’re supporting every employee—whether they have a disability or not—by regularly asking what resources or support they need to get their jobs done.
Many of the practices that accommodate people with disabilities tend to benefit everyone. This is known as the curb-cut effect. Curb cuts (the small ramps commonly built into modern sidewalks) were originally a feature fought for by disability advocates to accommodate people in wheelchairs. We now recognize this sidewalk design as universally beneficial—helping bicyclists, people pushing strollers, and people pulling a suitcase.
Flexible hours and remote working options don’t just help employees with disabilities. They help caretakers and people with other significant nonwork responsibilities. While people with certain invisible disabilities may have a need to not be on camera for the entirety of a three-hour meeting, most meeting participants would appreciate the flexibility of being able to turn off their cameras as well.
By making the workplace as accessible as possible for people with invisible disabilities, we tend to make everyone’s experience at work a little kinder, easier, and more inclusive.
Learn the 7 Behaviors Leaders Need to Create an Inclusive Workplace in our on-demand webinar.
Mark Smedley is a Leadership Advisor for DDI. He is passionate about helping organizations hire the best leaders, build their leadership bench strength, and make leadership development a way of work in a fast-paced world. Follow Mark on LinkedIn where he talks about the modern workplace, the human side of leadership, and perspectives on diversity, equity, inclusion, and belonging.