Voices: What it's like to live with an invisible disability

Thornton, far right, acts in a school production of ‘Not All Thieves Come to Harm You.’ “Not only does fibromyalgia cause your school work to suffer, but your social life suffers as well,” she says. “I was a young, ambitious, 20-something girl in Manhattan and couldn’t do half the things I wanted to, because of the lack of energy caused by constant pain.”

Some disabilities are visible, and some are not. And for college students trying to balance their education and their health, invisible disabilities pose unique difficulties.

After all, how can schools accommodate a disability you can’t even see?

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).”

But figuring out how to level the playing field for students affected by these disabilities is not an easy task. From op-eds about how to best accommodate diabetic students to debates about whether students with anxiety disorders should be permitted to keep emotional support animals, it can be hard to know just how to accommodate students whose disabilities are not physically apparent.

Fibromyalgia is just one example of such an invisible disability. While you likely wouldn’t be able to tell the difference between a student with fibromyalgia and a student without it just by looking at them, it’s a condition that can seriously affect students’ performance in school.

“Fibromyalgia (FM) is a common and complex chronic pain disorder that causes widespread pain and tenderness to touch,” explains Jan Favero Chambers, president and founder of the National Fibromyalgia & Chronic Pain Association.

“Both men and women with fibromyalgia often experience moderate to extreme fatigue, sleep disturbances, sensitivity to touch, light and sound, cognitive difficulties and a number of other overlapping conditions, such as arthritis.”

To Emily Thornton, who was 20 when she was first diagnosed with fibromyalgia, these symptoms are all too familiar.

“I have pain in my joints,” she says. “I have intense fatigue that lays me out for hours—sometimes days—at a time. I have aches that make it hard to move, and sometimes the pain gets so bad that I can’t walk or breathe.”

At the time of her diagnosis, Thornton was a sophomore at Fordham University-Lincoln Center in New York City, studying theater performance. And while she successfully graduated last spring, her fibromyalgia didn’t make that any easier.

“I often fell behind in my school work, especially in my purely academic classes,” she explains. “I had to take time off to sleep, and then I’d use all my energy to attend theater rehearsals. That was definitely not a sustainable solution.”

And according to Chambers, Thornton’s experience is quite common. “Students (with fibromyalgia) may miss class due to fatigue or pain,” she confirms. “And they may fatigue easily, so saving extra steps getting to class matters. Carrying a heavy backpack instead of a wheeled briefcase can cause muscle spasms and neck pain. Lack of sleep exacerbates fibromyalgia, and can put a college student into a fibro flare — a sudden increase of pain and symptoms.”

Some of the accommodations Chambers recommends that colleges make for students with fibromyalgia include giving students extra time to complete tasks that require hours of focused concentration; providing ergonomic seating; providing natural light instead of flickering, florescent light; and offering make-up exams, classes or assignments when symptoms become debilitating.

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.”

To hear more of George’s story, listen below:

So how can students best support their peers struggling with fibromyalgia and disabilities like it?

“One of the most important things students can do to support friends with invisible disabilities is to believe them,” IDA spokeswoman Hileman stresses. “Sometimes we have our own ideas about how much a person with illness or disability should be able to accomplish for their condition to be ‘real.’ We should not make judgment about what a person may be able to do by how he or she looks.”

And Emily Thornton agrees.

“We do not need to be told by professors, deans or peers that our pain is not valid. Having people tell you ‘it’s all in your head’ or to ‘suck it up’ — that makes me want to scream,” Thornton says. “It’s not in my head and I fight all day, everyday, to even stay upright.

“We don’t need professors and administrators to give us a get-out-of-jail-free card, either; we just need our colleges to help us come up with solutions to help us get our work done without killing ourselves over our school work. We need help finding a balance.”