Some disabilities aren’t exactly visible. They don’t require a wheelchair, a hearing aid or any other piece of equipment that helps us know to give up our seats on the subway or not shake our heads when we see a seemingly able-bodied person park their car in a handicap parking spot.
In fact, about 20% of people in the U.S. live with a disability, according to the 2010 U.S. census, but millions of those individuals live with what’s commonly referred to as “invisible” or “non-appearing” disabilities like depression, epilepsy, chronic pain disorder or learning disabilities.
These disabilities may vary in terms of severity or symptoms, but the people who live with them have one thing in common: They often encounter others who don’t know these disabilities exist at all, and even more resistance to understand what it’s like to live with these issues.
Here are five things people who live with invisible disabilities want people to know about what their experience is like — and, most importantly, how others can best understand and support them.
1. Their experience is largely unrepresented.
Ableism is hardly a mainstream hot topic of conversation, but even when disabilities are generally discussed, invisible disabilities are often ignored.
Alex Sanders, a 26-year-old with scoliosis, told Mic that while celebrities like Demi Lovato are raising awareness around mental health, “things like scoliosis or chronic pain, I don’t think those are talked about at all in a really meaningful way.”
But even when disabilities are discussed, they’re depicted as either “problems needing to be cured or as inspiration porn,” Miranda Adams, an individual who lives with epilepsy, told Mic. This is “extremely harmful” she said, because when disabilities are depicted in such polarized ways, individuals’ unique, complex experiences are invalidated in exchange for able-bodied individuals’ validation.
Because their experiences are largely ignored, the needs of people with non-appearing disabilities aren’t always considered.
“Often accommodations for non-apparent disabilities are not as clear-cut as other accommodations (ramp, interpreters, braille), therefore, when requesting accommodations, there can be ableist pushback,” Allie Cannington, a board member of the American Association of People with Disabilities, told Mic. And yet, just because these disabilities aren’t as visibly obvious doesn’t mean they can be ignored. “As someone with both apparent and non-apparent disabilities, it is the assumption that I only have the physical disability, when in fact, my non-apparent disability requires just as many daily accommodations,” Cannington said.
2. Their experience is frequently questioned by those who don’t get it.
Without being made aware of invisible disabilities, many people then tend to write non-visible disabilities off. Yet these issues can be debilitating for those who experience them. For example, even after surgery, scoliosis led to immense pain for Sanders.
“I was in severe pain for about four years,” she said. “It totally impacted my life. I couldn’t stand up, I couldn’t do the dishes, I couldn’t go out with friends, I couldn’t stand at concerts.” Surgeries eventually helped alleviate the pain but Sanders said she still experiences a degree of chronic pain.
Despite this harrowing reality, both Sanders and Adams said others frequently doubted their experiences were that severe.
“When there is something we cannot do, whether that be from exhaustion or pain due to chronic illness or from depressive episodes or a particularly bad side effect, we are told we are faking it, that it really isn’t that bad or we just need to suck it up,” Adams said. “This fear of being told I was lying or making excuses often kept me from telling friends or teachers that I had a seizure, just perpetuating the invisibility and stigma.”
Beyond stigma, the normalized discrediting of invisible disabilities can prove economically detrimental to those who experience in them. As Joyce Smithey, a lawyer who specializes in labor and employment, told NPR in March, individuals with invisible disabilities who request accommodations are often told by their employers they “don’t do that as a policy” — even though these individuals are legally entitled to these accommodations.
3. It can be socially and professionally challenging.
Sanders’ biggest source of anxiety while living with scoliosis — even in the midst of chronic pain and re-learning to walk — was that some friends and coworkers interpreted her disability as laziness and failed to understand the extent to which her disability debilitated her.
“We live in a world of hyperbole where people say, ‘I’m literally dying’ all the time,” she said. “If you actually feel like you’re in enough pain to say that — how do you explain that without it sounding like it’s more hyperbole? I think especially in the culture that we’re in and the language millennials especially use, it’s really hard to explain how bad your situation actually is.”
Sanders said she also faced hostility from others, as severe side effects from medication prescribed to her post-surgery rendered her physically unable to commute to work. “People couldn’t seem to grasp that,” she said, adding that they would question how sick she actually was.
“I don’t want anybody to worship me as an idol,” Sanders said. “Everybody goes through their own battles and struggles. I just want somebody to be like, ‘I understand you can’t do this and I don’t want you to feel guilty about it.'”
4. Some downplay their experiences to avoid awkward social situations.
Both Sanders and Adams described downplaying their experiences to manage others’ judgment of them.
“I would never break down and cry in the middle of work, because that’s just not what you do,” Sanders said. “And the people with chronic pain I know, that’s not what they do. They smile and kind of truck it out until they can’t, and they go home and that’s when they collapse. I can’t tell you how many times that my boyfriend would come home and I would be heaving in sobs because I was in so much pain.”
But Sanders’ attempts to share her experience with others often resulted in off-base suggestions that she should “just stop” taking her medication if the side effects were so bad or “try yoga,” although she was physically incapable of doing so. Downplaying her experience, therefore, seemed like the best option.
Adams described this experience as “internalized ableism” in a 2014 blog post. “I have really started to believe I won’t be able to succeed as a person with a disability unless I downplay it as much as I can,” she wrote.
Ideally, Sanders said, people should simply acknowledge others’ experiences, rather than resisting it or offering unhelpful suggestions.
5. Dealing with these disabilities can be enormously expensive.
In addition to social struggles, invisible disabilities are costly to deal with. While the Affordable Care Act requires health insurers to provide coverage to those with pre-existing health conditions, people with disabilities still have to shoulder costs associated with their conditions. For example, Sanders was prescribed medication that personally cost her $500 a bottle, and only lasted 12 days. Even with two forms of medical insurance, she paid about $5,000 of a $200,000 surgery — which was just one of three procedures she needed.
In addition to the straight financial costs the experience cost Sanders time and energy — she spent countless hours on the phone fighting and negotiating various medical bills, she told Mic, and perhaps detrimentally continued to work throughout her recovery because she couldn’t afford not to.
6. For some, the experience can be empowering.
Because many individuals with disabilities can “pass” as able-bodied, some with invisible disabilities have said their experiences are not “bad enough” to qualify them as disabled and feel isolated from potential support systems and communities.
Adams said she struggled with this feeling until finding an online epilepsy forum where users talked about the neurological disorder as a disability and as an identity. Following suit helped her feel empowered.
“By accepting [epilepsy] as part of who I was, rather than some external factor, I am able to better deal with those little annoyances, with the micro-aggressions, and with the misunderstanding from my friends,” Adams said. “By looking at it from the perspective of an identity, it felt less like a disease that needed to be fixed, and helped me better accept that I would be living with this for the rest of my life.”
Claiming the experience as part of her identity also empowered Adams to discuss her experience and subsequently raise awareness about it.
“The more open I am about my experiences, the more I can challenge the stigma surrounding disability and health,” she said. “When I casually mention my neurologist or meds or struggles obtaining a driver’s license, people often do a quick double-take, and I hope take a moment to reflect on how these things are a normal part of so many people’s lives, even if they have never noticed.”
Being more aware of invisible disabilities can create a culture in which all individuals are with equal respect and dignity. But it’s crucial to note the egregious disadvantages these individuals still unnecessarily, and often silently) face simply because they live with a disability. It’s time to start a conversation and recognize that the struggles individuals face may not always be visible — but they must always be taken seriously.
Hope you enjoyed reading this article I snagged from mic.com
It struck me, particularly about able-bodied people using my story as their inspiration.
Here is the difficult thing about inspiring others – it makes me feel I must always remain strong and steadfast. It becomes difficult to be honest when I am inspiration. I can’t remember who said it, but a woman with physical disabilities said “no matter how long you smile at a set of stairs, they will not turn into an escalator”.
While I find myself flattered to be an inspiration, I would prefer to just be motivation to not take the little things for granted. Each and every time you get out of bed in the morning, celebrate not being dizzy, when you drive your car, when you go to work, when you go out with friends, CELEBRATE those moments!! Don’t let my story “inspire” you… instead let it motivate you.