When You Don’t Look Sick
People with invisible disabilities and chronic illnesses number in the millions, but they’re often alone with their struggles. Here’s why they deserve attention and respect—and how to give it. by: Sagirah Ahmed
Norris finished the San Francisco and New York City marathons last year, and she’s training for another one. So you might be surprised to learn that she has multiple sclerosis, which causes numbness, tremors, and fatigue. Because she doesn’t always walk with a cane or use a wheelchair, she’s been yelled at for using a disabled parking space.
Rich Casias has worked for years as a hydrogeologist and an environmental consultant, but one summer he survived an airplane crash and fire. Now one-third of his body is covered with burn scar grafts; he also suffered a traumatic brain injury that affected his ability to focus. He is a “hidden burn survivor,” since his clothes often cover the scars. With the help of speech and cognitive therapists, he has learned how to maintain his concentration, so no one is aware that his days are filled with mental and physical challenges.
Aunia Kahn is a successful, award-winning artist and digital marketing agency owner with two dogs, a long-term boyfriend, and a “ticking time bomb” inside her. She suffers from Ehlers-Danlos syndrome and mast cell activation syndrome as well as other invisible disorders, which leads to a great deal of pain and makes eating most foods and going out into the world dangerous. For two decades of her life, doctors, friends, and family just didn’t take her seriously.
Sagirah, Rich, and Aunia live with invisible disabilities. If you met any of them, you would probably have no idea that their challenges were constantly on their minds. Bridging this gap, and understanding more about the silent ways illness and disability can change lives, is one of the most important things people can do for one another.
WHAT COUNTS AS AN INVISIBLE DISABILITY
The realm of invisible disabilities, sometimes called non-apparent disabilities, covers a wide array of chronic illnesses and conditions that even those who live with them sometimes don’t think to categorize that way. The Center for Disability Rights lists a number of such conditions, including deafness, autism, traumatic brain injury, fibromyalgia, Crohn’s disease, and diabetes, but there are many more.
“It’s not uncommon for somebody to get in touch with me and say, ‘I have such-and-such—is that an invisible disability?’ ” says Jess Stainbrook, executive director of the Invisible Disabilities Association. “My response is usually something like ‘Does it impact your life in some way such that you have trouble working or people misunderstand your situation? Then probably yes.’” When illness and pain aren’t apparent, he adds, other people, even those close to you, may not believe there’s any illness at all. “This disbelief can lead to misunderstanding, or rejection by friends, family, employers, and health care providers,” he adds, but they’re very real: “An invisible disability is something you can’t see that still hinders you in such a way that you may need accommodations.”
Of course, realizing that a condition is technically a disability and embracing it as such can be a complicated and deeply personal process. Disability is scary, because the very word implies a loss or a deficit. “Our society penalizes you for being disabled,” says writer and disability activist Imani Barbarin. “When your ability to live and find a home, food, and resources is tied directly to your productivity, identifying as disabled is not something that people want to do.”
Invisible disabilities and chronic illnesses present an additional challenge for many, because they don’t follow the “get sick, get treatment, get better” redemption arc that acute illnesses do, and their severity and presentation can often change from day to day or week to week. That’s hard for a lot of people to wrap their minds around, notes Kimberly Warner, founder and director of Unfixed Media. “There’s a real lack of understanding around the uncertainty and the never-ending cycles of chronic illness,” she explains.
A WIDESPREAD, SILENT CONCERN
It’s hard to say exactly how many invisibly disabled people there are, because so many don’t think to—or are afraid to—identify themselves that way. The CDC estimates that approximately 26% of the population lives with a disability, including non-apparent and invisible ones. That’s about one in four people. And that prevalence matters, because the larger a group of people, the louder their voices and the more power they hold in society.
Those with disabilities are the largest minority group in the U.S. and the only such group that any one of us could find ourselves entering at any time, whether temporarily or permanently. Those with disabilities are also irrevocably interconnected with all other minority groups, Barbarin notes, though disability is not often included alongside race, gender, and sexual orientation in discussions of diversity, equity, and inclusion. “Every single marginalization—whether based on class, race, gender, sexuality, or the lack of ability to access safe health care—leads to disability. When Black women’s symptoms are not believed and they’re waiting until an emergency to see a doctor, that is linked to disability; when we talk about people in food deserts because of class, that leads to disability,” she points out. “So if you’re not looking at disability at all, you’re missing a very important part of the puzzle.”
MISUNDERSTANDINGS ALL AROUND
“People tend to think about disability in the context of a disability benefits check that comes from either a short-term disability carrier or the federal government,” explains Matthew Cortland, a disability rights lawyer and Data for Progress senior fellow. “And because that’s the dominant mode of thinking about disability, it often means that folks will be like, ‘Well, I do work, and therefore I must not be disabled.’ We never really abandoned the sort of Puritan-work-ethic version of looking at someone’s worth as what they can produce for capitalism.”
But even those who can and do work encounter barriers in the workplace and everyday life that can make it difficult to bring their entire selves. Open floor plans can be challenging for those with sensory sensitivities; fluorescent lights can wreak havoc on migraine sufferers; and daily commuting can present challenges for those with chronic fatigue or mobility disabilities. The Americans With Disabilities Act protects people whose disabilities are not apparent, but getting a school or employer to grant accommodations can be an uphill battle against bias. Organizations like the Invisible Disabilities Association are working to make non-apparent disabilities more visible in society through legislation, ID cards, and even parking placards that may help reduce stigma.
NOW’S THE TIME FOR CHANGE
“Since the pandemic and the long COVID cases that continue to grow, there is more awareness of invisible disabilities,” says Warner. “That’s encouraging but also tragic, because so many more people are struggling and not getting the care they need, not just from doctors but from family members and friends who don’t understand that you can look normal while suffering inside.”
Even initial reports of long COVID cement the ongoing pandemic as a mass-disabling event. Analysis of the U.S. Bureau of Labor Statistics’ data on the civilian noninstitutional population age 16 and over shows that in 2021, 1.2 million more people were identified as having a disability than in 2020. Within the portion of that population participating in the workforce, there were 496,000 more people with a disability. That means more people who are suffering from those gaps in understanding and access and are in desperate need of community.
“A lot of times there’s this manufactured urgency with this idea of getting back to ‘normal,’ because that’s how people navigate society,” Barbarin says. “Realizing I’m not going to be cured, just learning to live with this was freeing,” Warner adds. “I’m a changed person through closing that one door and allowing myself to be in relationship with who I am instead of who I think I should be.”
WHAT PEOPLE WITH INVISIBLE DISABILITIES WISH YOU KNEW
Living with a less immediately visible or less widely understood disability can often be lonely. If you’re a friend, a family member, or an ally to someone with a less visible disability, keep these things in mind.
DISABILITY IS NOT A BAD THING
“I have several disabilities and I have a rewarding career, a supportive relationship, and a fulfilling life,” says award-winning writer Wendy Lu, who has bilateral vocal cord paralysis, GERD, migraines, and anxiety. “Those things are all compatible with disability, unlike what many of us are taught to believe from a young age.” Many disabled people also experience joy, pride, and a sense of community as a result of their disabilities.
SHARING CAN BE TRICKY
“Because I have both visible and invisible disabilities, often people assume my physical, visible disability is the only one that exists,” says Wendy. Disclosing the invisible disability can often feel like a risk and can change the dynamic between friends. If a disabled person chooses to share, then listen well, avoid changing the subject quickly, and ask questions like “Is there anything I can do to make our plans more accessible for you in the future?”
THERE’S NO SUCH THING AS NORMAL
As illuminated by the COVID-19 pandemic, life is always on the brink of shifting, and change is par for the course when you have a disability. “Disability has shown me that there is no default or ‘normal’ way of being,” Wendy says. “Living with a disability is not a static experience. It is dynamic and ever-changing. Some days are great, and other days are more difficult.”
PUBLIC LIFE IS NOT DESIGNED FOR DISABILITY
When you’re disabled, using public transportation may not be easy or even possible. You could find out that you can’t get inside a restaurant or can’t sit down or use the bathroom there. When nondisabled friends and family acknowledge this and even look into whether a venue has stairs, offers closed captioning, or has a varied menu, it goes a long way in showing that they care.
NAVIGATING THE WORLD WITH AN INVISIBLE DISABILITY
If you’re new to life with an invisible disability or you’re in a position where your symptoms are changing, here are some tips for navigating some of the more challenging situations you might come up against.
FIND MENTAL HEALTH SUPPORT
“My first recommendation, which I wish someone had told me eight years ago, is to seek mental health support,” says Warner, who has mal de débarquement syndrome, a rare neurological disorder. “It’s challenging living in a body that doesn’t work the way many other bodies do, and it’s challenging living in a world that can’t see that you’re struggling.”
Your first step might be to look for a therapist or licensed mental health expert who either specializes in working with patients who have chronic illnesses and disabilities or has experience with a disability themselves. Databases such as those from Psychology Today, TherapyTribe, Zencare, and TherapyDen might be good places to start.
While you’re deciding if a mental health professional is the right fit for you, remember that you can interview them and ask them questions about their specialties and expertise, how they prefer to work with clients, their typical therapy style, and anything else you might want to know. If they aren’t the right fit for you, it’s absolutely OK to let a therapist know and to keep looking until you find one who is.
GET ACCOMMODATIONS AT YOUR WORKPLACE
Start by gathering evidence that you can still perform your job effectively, and consider what you need to succeed, says Jess Stainbrook, executive director of the Invisible Disabilities Association. It’s helpful to begin talking to your medical providers as early as possible to make sure they know that they might need to sign paperwork or provide documentation to your workplace of your need for the accommodation.
RESPOND TO SOMEONE WHO QUESTIONS YOU
You might find that people give you dirty looks or challenge you for sitting in an accessible seat or taking a disabled parking spot (even if you have a placard). Stainbrook says the Invisible Disabilities Association designed the National Disability ID Card program for situations just like this in the hope that with a simple card, a person could confirm that they had the right to a public accommodation. But until that’s widely available and understood, Wendy Lu suggests taking an accessible seat without offering an explanation. She says, “If someone said something like ‘Why are you taking up that seat? You aren’t disabled,’ I’d probably just respond by saying, ‘I am disabled,’ and leave it at that. Remember, they aren’t entitled to your whole life story, and you don’t have to justify yourself or your needs to strangers.”
INCLUDE YOUR FRIENDS
There’s nothing like having supportive loved ones when you have a disability. Warner recommends offering resources to those who are close to you with the goal of helping them learn more about your disability. These could include medical resources as well as personal stories that explain what it’s like to live with your disability (find them on TikTok and Instagram; Warner’s Unfixed Media also has a wealth of videos).
The more people close to you know about how you navigate your life, the more supportive they can be. Those of us with invisible disabilities “often say no to engagements more or cancel more often than we used to,” says Warner. She adds that we should “tell our friends, the ones we care about, that it’s not personal.”