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.
He takes such good care of us.
God cares and NO we do not need to get everything theological perfect in order to be quite overwhelmed with His care.
Abnormal “neurological” (the best way we can understand it today) situations are trials. They don’t need to be failures. Sometimes they can prove the sharpening stone against which a character that is not merely “acceptable” but of godly excellence can be honed. When our pride fails to be enough and life deals us an utter pratfall, then God shows us a more excellent way.
What BS. I have two children with type 1 diabetes. It is NOT a disability. It is a disease that must be managed but one can live a full life without accommodations by society.
These whiners make me sick.
Well played, sir.
Had it for years, I have not had an attack for a couple years but it is not fun.
Are there not more types of diabetes than this?
If you had Crohn’s you wouldn’t be so critical. It varies from painful and crippling to lethal. That is the case with many of these disorders which might even be treatable were a”orphan” drugs made available. She doesn’t look like she is waiting for a handout.
I have used Closed Captions for several years am practically deaf in one ear today. Rush brings this up often saying people really do not want to repeat themselves and it irritates them when they are asked. I use headphones to listen to Rush, it helps.
People used to say the same thing about PMS and migraine headaches.
Type 1's cause is not understood. Type 2 is clearly from obesity and bad diet.
A new show Allegience, about a family of cold war Russian Spies, has an autistic kid in the CIA that uses a rubber ball that he twirls in his fingers like a magician might.
All the spongers and moochers on disability suck funds from the truly needy and disabled.
Sorting them out is difficult under any circumstances but we now have a government that sees the government dole as a political tool and doesn’t really try to limit assistance on the basis of true need.
How large a percentage of the population can be on the dole before the economy collapses and/or the producers and taxpayers just give up?
The government’s answer is..............print more money!
Bottom Line: If you diagnosed yourself, it is created. Too often these “hidden diseases” are real diseases that are misdiagnosed.
Chronic Lyme Disease is such a disease as is Chronic Fatigue.
Sounds to me like we all have disabilities. :O
I was told I had fibro about 20 years ago. My biggest problem right now is costochondritis. It is an inflammation where the ribs attach to the sternum. The symptoms mimic a heart attack.
My daughter died from complications of Crohn’s. She was in a lot of pain for months before she died in 2004. It is a terrible disease.
[ If you had Crohn’s you wouldn’t be so critical. It varies from painful and crippling to lethal. That is the case with many of these disorders which might even be treatable were a”orphan” drugs made available. She doesn’t look like she is waiting for a handout. ]
Crones is bad, and i know people with it and it is a hellish disease, the point i was trying to make is there are people out there claiming to have it (as well as other disorders that are not so evident) who don’t in order to grift special privileges and this hurts the people who are truly suffering.
Very interesting. For about 8 weeks this winter my muscles hurt so bad that it felt like I was back in college and just gone through the first grueling practice of the season. Every muscle in my body felt as though there were a build up of lactic acid for no apparent reason, and it hurt 24 hours a day. I wondered if it was going to be a permanent part of my life...firbromyalgia, MS, etc.
Now, the pain is mostly gone. I keep home remedies on hand and I can’t remember if I took lemon balm either as a tea or glycerite. It helps me to relax at night. I do take it but don’t remember if it was right before the pain started to go away.
A bout with herpes 1 landed my 2 year old in the hospital so we need to keep cold sores at bay in the rest of us and so far, lemon balm has done that.
Sounds like you should also qualify for the coveted “reserved parking space” and “challenged” (formerly handicapped) rear view mirror ID and fresh scent dangling do-dad. That should cover the balding, but I don’t know if the “cane” will qualify you for additional “free stuff”.
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