What does a patient with chronic disease look like? Sometimes they look like everyone else, as many diagnosed with "invisible illnesses" are pointing out. In a recent NPR story, Carly Medosch, a former ePatient scholar at Stanford's Medicine X, speaks about discrimination in the workplace for those whose health challenges are not immediately obvious. Medosch has been living with Crohn's disease for 20 years and fibromyalgia for one year.
From NPR's write-up:
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... 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."
But a foot in the door doesn't mean people are sympathetic: Wayne Connell, who founded the Invisible Disabilities Association after his wife was diagnosed with Lyme disease and multiple sclerosis, is also quoted in the piece:
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... 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?
Perhaps more importantly, disabled people have legal rights that are being ignored. Joyce Smithey, a lawyer who specializes in labor and employment, says it's not uncommon for employers to say "We don't do that as a policy" when people with invisible disabilities request accommodations. Smithy says:
And that's a problem, 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.
Previously: When you say nothing at all: Living with an invisible illness, and How to cope with an "invisible illness"
Photo by Hugo Chisholm
