Posted on 03/08/2015 2:57:53 PM PDT by E. Pluribus Unum
Carly Medosch has conditions that cause intense fatigue and chronic pain. She took part in a 2014 Stanford Medicine X conference that included discussion of "invisible" illnesses.
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.
We deal with this with our son. To the average eye he needs a good swat. He’s actually high functioning autism with a sensory processing disorder. Spankings and other forms of negative discipline don’t work. Positive reinforcement does. It’s difficult for us sometimes because we know we’re being judged as parents with poor parenting skills. He’s actually much better now that we know what’s going on and have awesome input from his private school. But every now and then there’s a meltdown that can’t be spanked away.
I’ve almost argued on here with a FReeper or two who insisted that, because they couldn’t see a disability, it wasn’t there. Mine is sort of noticeable, since I’m bald and use a cane. I’m so thankful I pass muster with these people!!!
On one hand, someone could say, count your blessings if you are normal looking and have a so called ‘invisible’ disability. On the other hand, everyone’s perception of pain or fear is different. I would not wish Crohn’s disease or that other one I hear about Diverticulitis on anyone.
I’ve met a family where everyone in the last three generations was smart, financially successful, physically very attractive, plus they were very nice (christian) people in general. But Diverticulitis ran rampant in this family among the adult men. The younger ones tended to worry about when it would befall them. Such anxiety tends to make a sensitive stomach system that much worse. They could benefit from genetic research if it has progressed that far yet.
Godspeed.
The sad part is how many use these as a scam...
....Which really hurts those who have real disabilities.
Thanks! We deal with it. Sometimes poorly, but we deal with it! His school is so supportive. The principal told me, when I asked if he could stay in school since it’s private, that Jesus said let the little children come to me. She pointed at a statue of Jesus when she said it, and then asked me why the school would feel differently than God. They are a blessing!
I have a disabled spouse. She hasn’t been able to walk and has needed assistance or a wheelchair for more than 40 years.
I on the other hand have a service related hearing disability which of course you can’t see (unless you notice my hearing aids). I’ve found people treat blind people really well, but they just “hate” people who can’t hear.
I think though, that most of the outrage people have over invisible disabilities revolves around Handicap parking. At least in our state, to qualify for a handicap plates or placard, you must be unable to walk 200 feet with out assistance. I bet 80% of the people with the placards abuse them.
The young woman in this article probably wouldn’t qualify for one...
I walk with a cane. Bad knees.
[ The sad part is how many use these as a scam... ]
Exactly, and those who are scamming basically hurt those who truly suffer by de-legitimatizing them when the scammers are caught.
Look at the service animal “racket” people are claiming their poodles are service animals, which makes someone with a real service animal look less like they actually need it, which they do.
He’s living in an increasingly insane world.
I’ve lost count of how many FReepers have told me that fibromyalgia is just an excuse for being lazy.
For that matter, one of my doctors said that she used to believe that . . . until she developed the disorder herself. She said she also didn’t realize how much pain the human body could truly endure until then.
Mine is more-or-less under control, but I still wouldn’t wish it on anybody.
I am a great lookin dude i would love to be less handsome and not struggle with chrons
Lucky you. Some people really do ‘have it all’, at least for a while.
Indeed. Trying to raise my son to be a man and my daughters to be ladies is getting harder and harder. I work with a woman who insists that the autism can be spanked out of children. I literally have to bite my tongue sometimes in order to keep my mouth shut.
The one I suffer from gets nothing but disgust from many people, I’ve lost a considerable amount of my hearing. If a person is asked to repeat themselves or speak a little louder it ticks them off. Most just say get a hearing aid without even realizing there are different variations of loss and hearing aids don’t solve some. One of the reasons I love computers and forums, I can hear y’all just fine.
I did not realize until they were grown that two of my three children are special needs. When is RAD and the other one is bipolar
Prayers up
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