Fighting to be Understood: Living with ‘Invisible Disabilties’

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Sometimes, a disability is more obvious than another. They can be immediately apparent, especially when someone relies on a wheelchair, walking cane, or crutches. Although, there are other types of disabilities, considered ‘invisible disabilities’, which are not as easily understood. People who live with them face a completely different set of challenges in their workplace, home, and community.

The types of diseases that are categorized into the invisible column are things like chronic pain, chronic fatigue, mental illness, and plethora of others. Although these diseases can’t be seen, it doesn’t mean that they aren’t as debilitating as any other disability. Carly Medosch spoke with NPR about her life with Chron’s disease and how it affects her daily life. Chron’s disease is an inflammatory bowel condition that Medosch has had since she was 13. She recalls times where she would lay on the bathroom floor and think to herself “Am I going to die? Should I jump out in front of traffic so that I can die?” just because of the pain that her disease has caused her.

Recently, she was diagnosed with fibromyalgia, a condition that leaves Carly in a constant state of full ­body chronic pain and intense fatigue.

For Carly and others who struggle with an invisible disability, occasional stays at the hospital and surgeries are not what they would consider the hard part. Mundane and seemingly normal activities are what can be much more difficult.

“Washing my hair, blow­drying my hair, putting on makeup ­ those are the kind of activities that can exhaust me very quickly,” she says. “So you kind of blow­dry your hair and then you sort sit down for a little bit.” Things like walking to the subway or bending down to pick something up can take a lot out of someone in Carly’s condition, but you would never assume that from the outside.

It’s difficult to know the number of Americans with an invisible disability, but it’s estimated that there are millions. Their conditions may range from lupus to bipolar disorder or diabetes. The severity of each person can range from case to case, and the fear of stigma means that most of those suffering would often prefer to not even talk about their illnesses.

Although, in employment discrimination charges that were filed with the Equal Employment Opportunity Commission between 2005 and 2010, the most commonly cited conditions were invisible ones, according to research done by 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, founder and head of the Invisible Disabilities Association. He started the group after his wife was diagnosed with Lyme disease and multiple sclerosis.

He recalls how they would park in handicapped parking spaces and his wife wouldn’t use a wheelchair or a cane, and the looks and disapproval from other people who assumed they were taking advantage of something that an actual disabled person could use.

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

Carly says that she’s comfortable talking 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 disabilities can be hard to fathom ­ especially when so many people who live with them seem, outwardly, at least, to be just like everyone else.