People With 'Invisible Disabilities' Fight For Understanding

Mar 8, 2015
Originally published on March 8, 2015 7:25 pm

Some disabilities are more obvious than others. Many are immediately apparent, especially if someone relies on a wheelchair or cane. But others — known as "invisible" disabilities — are not. People who live with them face particular challenges in the workplace and in their communities.

Carly Medosch, 33, seems like any other young professional in the Washington, D.C. area — busy, with a light laugh and a quick smile. She doesn't look sick. But she has suffered from Crohn's disease, an inflammatory bowel condition, since she was 13. There have been times, she says, when she's "been laying on the floor in the bathroom, kind of thinking, 'Am I going to die? Should I jump out in front of traffic so that I can die?' Because you're just in so much pain."

More recently, she was diagnosed with fibromyalgia, a condition that leaves her in a state of full-body chronic pain and intense fatigue.

For Medosch and others who struggle with an invisible disability, occasional hospital stays and surgeries are not the hard part. Mundane, everyday activities can be more difficult.

"Washing my hair, blow-drying my hair, putting on makeup — those kind of activities can exhaust me very quickly," says Medosch. "So you kind of blow-dry your hair and then you sort of sit down for a little bit."

Walking to the subway or even bending down to pick something up can take a lot out of her. But that isn't apparent from the outside.

"I kind of call it being able to pass," she says. "So I can pass as a normal, healthy, average person, which is great and definitely helps ease my everyday life — especially in interactions with strangers, getting your foot in the door in a situation like a job interview."

It is hard to pinpoint the number of Americans with an invisible disability, but it's estimated there are millions. Their conditions may range from lupus to bipolar disorder or diabetes. The severity of each person's condition varies, and the fear of stigma means that people often prefer not to talk about their illnesses.

But in employment disability discrimination charges filed with the Equal Employment Opportunity Commission between 2005 and 2010, the most commonly cited conditions were invisible ones, according to analysis by researchers at Cornell University's Employment and Disability Institute.

"You know, it's that invisible nature of an illness that people don't understand," says Wayne Connell, the founder and head of the Invisible Disabilities Association. He started the group after his wife was diagnosed with Lyme disease and multiple sclerosis.

"We'd park in disabled parking and she didn't use a wheelchair or a cane, and so people would always give us dirty looks and scream at us," he recalls.

"When they see someone in a wheelchair, OK, they get that they're in a wheelchair. But what if they have chronic pain, what if they have PTSD — anything from cancer to peripheral neuropathy to autism?"

Medosch has had similar experiences with her handicapped parking tags. She also says that she faced challenges obtaining accommodations from a prospective employer.

Joyce Smithey, a lawyer who specializes in labor and employment, says that's not uncommon. When people with invisible disabilities request accommodations, Smithey says, some employers respond, "We don't do that as a policy."

"And that's a problem," Smithey says. "Because that person is not asking to partake of a benefit that's offered in a policy; that person is asking for an accommodation they're entitled to under the law."

When a disability isn't immediately obvious, others — at work, school or even at home — sometimes doubt it exists and accuse those who suffer from invisible conditions of simply angling for special treatment.

Medosch says she's comfortable being vocal about her disability now because she's well protected at her current job. She hopes discussing her own experience will help boost understanding, but acknowledges invisible disability can be hard to fathom — especially when so many people who live with it seem, outwardly, at least, to be just like everyone else.

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Transcript

ARUN RATH, HOST:

This summer will mark the 25th anniversary of a law that protected the civil rights of Americans with disabilities. Of course, civil rights laws don't mean the discrimination ends, and that's been especially true for Americans with invisible disabilities. Naomi Gingold explains.

NAOMI GINGOLD, BYLINE: When I meet Carly Medosch, she seems like any other young professional - busy with a light laugh and a quick smile - until she tells me about these episodes...

CARLY MEDOSCH: ...When I've been laying on the floor in the bathroom, you know, kind of thinking, am I my going to die? Should I jump out in front of traffic so that I can die because you're just in so much pain?

GINGOLD: And in one typical visit to the emergency room, the doctor thought she was there just to get drugs.

MEDOSCH: He told me that he knows that my tummy hurts, but that I need to go home. And I said, you know, I've had Crohn's disease, at the time, for 10 or 15 years. It's not my tummy. It's my intestines. And it's really scary because those are the times where you wish that you looked really sick.

GINGOLD: Medosch has had the inflammatory bowel disease since she was 13. More recently, she was diagnosed with fibromyalgia meaning that she has full body chronic pain and intense fatigue. For Medosch and the millions of Americans who struggle with what's known as an invisible disability, the occasional hospital stays and surgeries are not the hard part. It's everyday mundane activities.

MEDOSCH: Washing my hair, blow-drying my hair, putting on makeup - those kind of activities can exhaust me very quickly, so you kind of blow-dry your hair, then you sort of sit down for a little bit.

GINGOLD: Walking the Metro or even bending down to pick something up can take a lot out of her, but from the outside, you'd have no idea.

MEDOSCH: It is catch-22. I kind of call it being able to pass. So I can pass as a normal, healthy, average person, which is great and definitely helps ease my everyday life, especially in interactions with strangers, getting your foot in the door in a situation like a job interview.

GINGOLD: The number of Americans within an invisible disability is hard to count. Chronic conditions range widely from lupus to bipolar disorder or diabetes. The severity of each person's condition varies, and stigma means that people don't want to talk about it. But in disability discrimination charges filed with the government from 2005 to 2010, the most commonly cited conditions were actually invisible ones.

WAYNE CONNELL: You know, it's that invisible nature of an illness that people don't understand.

GINGOLD: Wayne Connell is founder and head of the Invisible Disabilities Association.

CONNELL: When they see somebody in a wheelchair, OK, they get that they're in a wheelchair. But what if they have chronic pain? What if they have PTSD? Anything from cancer to peripheral neuropathy to autism...

GINGOLD: He says his organization takes a broad approach because regardless of the condition, people with the invisible disabilities have a lot of the same experiences. He started the association after his wife was diagnosed with Lyme disease and multiple sclerosis.

CONNELL: We park in disabled parking, and she didn't use a wheelchair or a cane, so people would always give us dirty looks and scream at us.

GINGOLD: Medosch has had similar experiences with her handicap parking tags. She's also been threatened at work and even had a job offer rescinded after explaining her disability.

MEDOSCH: I said I would like to accept, but I just need to let them know that I had a disability. You know, I said I needed to make sure that I have access to a bathroom or flexible schedule at times, you know, to accommodate doctor's appointments.

GINGOLD: What she thought were basic accommodations for her job as a graphic designer.

MEDOSCH: And to my surprise, the HR person said that a primary job duty was working in the holiday Christmas parade. So I would have to be on a float, going all around the town outside - you know, no bathrooms, no opportunity to take that day as a sick day.

GINGOLD: Medosch walked away. Joy Smithey is a lawyer who specializes in labor and employment. She says those kinds of statements sound ridiculous, but are not uncommon. Or frequently, employers will just say...

JOY SMITHEY: We don't do that as a policy. And that's a problem because that person's not asking to partake of a benefit that's offered in a policy. That person is asking for an accommodation they're entitled to under the law.

GINGOLD: And because these conditions aren't visible, people often think...

SMITHEY: Oh, you're not really disabled. You're just trying to get these benefits.

GINGOLD: At work, school, in public situations or even with friends and family - Medosch says she's comfortable being vocal about her disability now, because she's well-protected at her current job.

MEDOSCH: Obviously, being in pain and having fatigue - you know, you can have a shorter temper sometimes, but, you know, I try to be really compassionate to myself.

GINGOLD: To herself and also to other people. It's hard to understand, she says, especially when millions of people who live with disabilities seem, on the outside, just like everyone else. For NPR News, I'm Naomi Gingold. Transcript provided by NPR, Copyright NPR.