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.
I was kinda being a wise apple with the looks thing but for self employed tradesman i know where every bathroom is in the southland
Can I get a service human and force them to take care of me.....
Oh wait that is slavery / obamacare.....
One is RAD. Lol. Long day.
” I work with a woman who insists that the autism can be spanked out of children”
I have a severely autistic 20 year old son.
When he was about 10 a distant uncle at a family reunion told me that all he needed was “To have his ass busted with a belt”.
I explained that it was neurological disorder and I couldn’t beat the Autism out of him anymore than I could beat the stupid out distant uncles.
I didn’t get anymore helpful advice.
We know so much more now! For example, if my son can chew on something (his chewelry necklace or chewy pencil topper), that very high iq shines through. Twenty years ago he would have been punished for chewing. Good luck and prayers!
Ugh. I might use that line if you don’t mind!
Funnies aside, sometimes such habits bespeak anxiety.
“Ugh. I might use that line if you don’t mind!”
Help yourself. It really shuts those little helpers up.
Crohn’s is a real organic disease. Fibromyalgia, on the other hand, probably is best treated by a mental health professional.
As a side note, I taught him that Barrack Obama is on the three dollar bill. I used to love asking him that in front of my lib relatives!
I hear ya!
Hearing loss is the ultimate “invisible disability”.
Hmmmm....I read the other day that it is successfully being treated as a nerve disorder with a combination of two anti-herpes agents.
I don’t know every circumstance of course.
Dealing with a world out of tune can lead to anxiety. I hope he learns about God (and that God is a whale of a lot more than a presence in church services, something he might have a lot of difficulty dealing with). God can be there when no human can. Nothing human is either too fast or slow for God.
On the secular side there’s a sympathetic song “Ants In My Pants.”
http://gunnarmadsen.bandcamp.com/track/ants-in-my-pants
While the disabilities are invisible, it’s easy to see why. They get a check every month.
The taxpayer who pays for all of this free money for nothing is the only person who is invisible.
When we look at some of doctors’ theories a few centuries ago for things we understand pretty well (well enough to keep people surviving through) now, we have to scratch our heads. Sometimes it’s a little of “both-and.” The idea of a psychiatric medication was itself new until the 1950s.
There is always the temptation to scam, but problems like this are seen in people who would have no known reason to lie, who prove quite conscientious in many things.
Fibromyalgia is not a mental health issue. It can be a very debilitating disease. The worst part is feeling that you are a mental case until you finally get a diagnosis.
I wouldn’t wish it on my worst enemy.
Also, I would question why the public ever let self aggrandizing politicians talk it into the idea of a public equivalent of charity... all the cost, none of the caring.
I agree with y’all about the invisible disabilities...
Regarding being hearing impaired:
People just don’t get it, they don’t understand that they have to
turn towards the person so their lips can be read
enunciate their words
speak slower
use captions on presentations
use email more than phone
I’ve been severely hearing impaired all my life and the dr says its only going to get worse...
I didn’t read down to your comment, so am pinging you to what I posted:
http://www.freerepublic.com/focus/news/3265705/posts?page=39#39
the operative word for hearing impairment is
ISOLATION
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