Talk to a chronic pain patient and you’ll hear a resounding yes to that question.
A recent story in USA Today’s college edition reinforced this concept.
According to Deb Hileman, a spokeswoman for the Invisible Disabilities Association (IDA), invisible disabilities run the gamut.
“The term ‘invisible disabilities’ can refer to debilitating pain, fatigue, dizziness, cognitive dysfunctions, brain injuries, learning differences and mental health disorders, as well as hearing and visual impairments,” she says. “They are not always obvious to onlookers, but can sometimes or always limit the daily activities (of the people they affect).”
George Rosett, a 20-year-old junior at Scripps College in Claremont, California, also knows just how debilitating this disease can be.
“I was diagnosed with fibromyalgia at the beginning of my sophomore year of college,” she says. “I remember the doctor doing a pressure point test, where he pressed firmly with two fingers on different parts of my body. Everywhere he pressed; it ached, like he was pushing on a bruise. I had always thought was a normal experience — so I was surprised when he told me, ‘For everyone else, that doesn’t hurt.’”
The doctor prescribed Rosett one medication after another. The first medicine Rosett tried gave her nausea and vertigo; the second left her lightheaded and prone to passing out.
“With fibromyalgia, medication is really just a crapshoot. People come in expecting there to be some cure, but there’s not, and that can be really frustrating.
“When I flare up, my muscles ache, and I feel nauseous and exhausted,” she says. “One huge factor for me is stress — so I try to cut down on stress by sometimes allowing myself to skip a class, or to watch a movie instead of doing homework.
But Rosett says that sometimes creates a different kind of stress.
“In college, there’s such an emphasis on being productive all the time — and I sometimes feel like I’m being held to a standard that is so easy for everyone else and so difficult for me.”
“And it’s hard because you have less credibility when your disability isn’t visible,” Rosett explains. “People doubt you, or just think you’re trying to get out of work.”
None of these surprises Dr. Ginevra Liptan, who founded the first practice devoted to fibromyalgia in Lake Oswego, Oregon.
“I think a huge contributor is that people suffering from this “invisible” illness often feel misunderstood by the medical community- and even sometimes by their families,” she said.
Look for a future story on the National Pain Report on a woman (and her mother) who have battled to address this whole issue of disability and have created a non-profit to educate and inspire people to battle it.