What invisible disabilities are — and why they matter
As I write this, bolts of electric pain shimmer down my right leg and up toward my shoulder as my joints throb in time with my heart. Every time I stand, my vision kaleidoscopes to black and back again. And today is a good day. To look at me, I’m just another 35-year-old white woman, about as put together as the next person. But I’m one of millions of Americans living with an invisible disability, about 10% of the population, according to one Disabled World estimate. And there are likely far more of us than that.
This Year of Making Noise story is also part of Prevention’s We Are Not Invisible project, a series of personal and informative stories that shed light on those with Invisible Disabilities.
My symptoms first appeared when I was in college, but it took seven years for me to get diagnosed with fibromyalgia. Because it’s a diagnosis by exclusion, meaning there are no tests to confirm it, I saw two handfuls of doctors in multiple disciplines to figure out what was causing my symptoms by ruling out just about everything else. In 2021, I contracted COVID-19 and developed long COVID, another invisible illness that has compounded my original symptoms and added a few new ones to the mix.
All of this means I’ve had to tune into what my body needs more consistently than most people. Each morning, I wake up and take stock of how I feel and what adjustments I’ll have to make as I move through the world outside my bedroom. Some days, that means sitting on a heating pad while I work from home. Others, it’s rescheduling plans because I just don’t have the energy. It’s a constant assessment that often involves uncomfortable discussions with friends and colleagues because the invisible nature of my disabilities means having to self-disclose how I’m feeling to get the accommodations I need.
Before I had a name for what was going on in my body, I imagined that Dr. House would arrive and fix what was wrong with me, then my life would go back to how it was. But once I learned to work with instead of against my limitations, I spent so much less mental energy chasing an arbitrary definition of normal that was no longer possible. That’s also why I use what’s called “person-first language,” that emphasizes disability as an identity marker and not an external factor. Even though I wouldn’t have signed up to join, the disability community is a rich and varied one, full of unique individuals with needs and experiences that are as diverse as they are valid.
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 the following as examples of invisible disabilities: learning differences, deafness, autism, prosthetics, traumatic brain Injury, mental health disabilities, bipolar disorder, diabetes, ADHD, fibromyalgia, arthritis, Alzheimer’s, anxiety, sleep disorder, Crohn’s disease, post-traumatic stress disorder, epilepsy, multiple sclerosis and cystic fibrosis, but there are many others.
“It’s not uncommon for somebody to get in touch with me and say, ‘I have such and such, is that invisible disability?’” says Jess Stainbrook, executive director of the Invisible Disabilities Association. “My answer is, ‘Does it impact your life in some way? Then probably, yes.’ An invisible disability is something that you can’t see, but 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. And we’re socialized to believe that not having the ability to do something makes that person somehow less than someone who can.
“Our society penalizes you for being disabled,” says writer and disability activist Imani Barbarin. “When your ability to live, 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. One day, I might be able to walk a couple of miles to the farmer’s market, go out for lunch, then see a movie in the afternoon. Another, I might be too tired or in too much pain for any of that. That can be hard for some people to wrap their heads around, notes Unfixed Media founder Kimberly Warner. “There’s a real lack of understanding around the uncertainty and the never-ending cycles of chronic illness,” she explains. “I think the redemption arc is reinforced by our media. And people don’t have a lot of room for the uncertainty that chronic illnesses hold.”
How prevalent are invisible disabilities?
The number of disabled people in our country is legion and growing, but it’s hard to say exactly how many invisibly disabled people there are, because so many of us don’t think to—or are afraid to—identify ourselves that way. The CDC estimates that approximately 26 percent of the population lives with a disability, including non-apparent and invisible ones. That’s 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.
Disability is the largest minority group in our country and the only one that anyone of us could find ourselves entering at any time, whether temporarily or permanently. It’s also irrevocably interconnected with all other minority groups, Barbarin notes, even though it’s not often included alongside race, gender, and sexual orientation in diversity, equity, and inclusion discussions. “Every single marginalization leads to disability. Class, race, gender, sexuality, 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.”
Until recently, I didn’t think of disability as one of my intersecting identities, even though it impacts every moment of my life. But that can lead to leaving accommodations and assistance on the table.
People with invisible disabilities face misunderstanding at work and beyond
“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 disability rights lawyer and Data for Progress fellow Matthew Cortland. “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 experience barriers in the workplace and everyday life that can make it difficult to bring one’s entire self to the equation. 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 challenges. Many disabled people rejoiced when virtual events became the norm during the first stages of the COVID-19 pandemic, for example, because it allowed them to participate from home. I’ve attended meetings while using a foam roller or even laying in bed, taking breaks when my body demands them rather than feeling chained to a desk for 8-10 hours at a time. The flexibility that allows me to be a productive worker and a better-functioning human wasn’t possible pre-pandemic, and it’s no longer an option for many workplaces that have brought their employees back to in-person offices full-time.
But just because the world has “reopened” doesn’t mean we have to let go of the protections that made our early pandemic lives easier. “It’s a large population whose civil rights relative to disability are protected by federal law, state law, and in some cases, municipal law, who oftentimes aren’t aware that they count as members of the disability community and enjoy those equal protections,” Cortland says. “Those protections include things like workplace and education accommodations, access to public spaces and the government programs many of us think about when we hear the word ‘disability.’”
The Americans With Disabilities Act protects invisible disabilities as well, but getting accommodations at work or at school can be an uphill battle, and a challenging one for someone who already doesn’t feel their best. “When we’re talking about disability in the United States, particularly when we’re talking about the legal regime around disability and the legal rules, it is incredibly confusing. And I am not entirely sure that’s not by design,” Cortland adds. 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 the stigma that can make accessing assistance harder and bring invisible disabilities out into the light.
Now’s the time for change
Today, there are more invisibly disabled people than there have ever been, which means our needs are getting more attention too. “Since the dawn of the pandemic, and the long COVID cases that continue to grow, there actually is more of an awareness of invisible disabilities than there probably ever has been,” Warner says. “And that’s exciting, but in some ways, it’s tragic, because there are so many more people that are struggling and not getting the care that they need, not just from medical doctors, but even from family members and friends who don’t understand that you can look normal and be really 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 aged 16 years 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, in access and 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. “Some people might get back to 100%, but a lot of people [with long COVID] need to accept that they are now disabled. My advice is, take a step back, read about disability history, literature and personal experiences, and understand you are now part of a larger tapestry of disabled people.”
Part of embracing the invisible disability experience for me, came down to just that: learning the rich tradition of disability advocacy and finding my community, as well as recognizing that “normal” is a construct, not a standard. “Realizing that I’m not going to be cured and just learning to live with this was freeing,” Warner adds. “I’m a changed person by closing that one door and allowing myself to be in relationship with who I am instead of who I think I should be.”
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