By Jane Marks, news correspondent
Running through the streets of Boston, all Robert LaFrance could think about were the chocolate chip pancakes from IHOP. It’s what got him through the 12 miles as he trained for the Boston Marathon.
But when he dragged his tired legs into his apartment, he didn’t indulge in pancakes. Instead, as he sat down to a healthy meal of vegetables and grilled chicken, LaFrance looked around his room at the flags from Germany, Israel, Taiwan, Thailand, Poland, Czech Republic and the Netherlands. Flying around the world, LaFrance had few constants in his life, except for his insulin pump.
“This little string is attached to a needle that is actually in my stomach right now,” said LaFrance as he explained how to calculate the amount of insulin he needs. “There’s a little bit of math to it, but it’s okay.”
LaFrance, a third-year Northeastern student majoring in international business, was diagnosed with Type 1 diabetes mellitus when he was in ninth grade and has been adjusting to the new lifestyle ever since. Coming to Northeastern, he wasn’t sure what the school’s insurance would cover, so he didn’t go to any appointments. When he finally got a check-up, his doctor told him his body hadn’t been given enough insulin. If he continued, it could have resulted in blindness, seizures and infections.
LaFrance is not alone. A 2014 report from the American Academy of Pediatrics, an organization of 66,000 pediatricians based in Itasca, Illinois, says at least 15 percent of incoming college freshmen report having a chronic health condition or disability.
The true percentage is likely higher than this, as it doesn’t take into account students who have not been diagnosed yet or who do not report having a problem to avoid the stigma associated with it.
To encourage students with chronic illnesses to come forward, there are efforts to raise awareness and eliminate the negative stigma using books, outreach programs and support groups. Colleges are also trying to help through scholarships, disability centers and specialized programs like the Chronic Illness Initiative.
The Initiative was founded in 2003 to offer support and raise awareness for students with chronic illnesses at DePaul University in Chicago. It received positive feedback and had over 200 students in the program within a few years, but, despite its popularity, the program merged with the university’s Center for Students with Disabilities because of limited funding.
“I think that chronic illness is more of a shape shifter. Especially because it’s so hard to diagnose,” said Laurie Edwards, the author of the 2008 book “Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties” and a professor of creative writing for future health care professionals at Northeastern University. “The needs of the rare disease population are so different from the needs of the Type 1 diabetic. There is just such a range.”
Some illnesses, like cancer, are universally understood, which makes them easier to describe. Other diseases such as lupus are lesser-known, making it harder for those students to explain their needs.
“When I first got to Northeastern, I tried to hide it,” LaFrance said. “You always have people that will crack the joke, ‘Oh, here’s a cupcake. Oh, wait you can’t have it.’”
While centers for students with disabilities on campuses have existed in some capacity for the past 50 years, they didn’t have enough accommodations for chronic illnesses.
In the 1970s and 80s, with new legislation in place to further the education of disabled students, colleges rushed to certify professionals who would support these students.
In 1977, The Disabled Students on American Campuses Conference was held at Wright State University in Dayton, Ohio, where 32 people from across the country came to talk about college students with chronic illness. The group would later be called the Association of Higher Education and Disability, a professional organization with over 2,800 global members.
Despite this progress, innovation at universities was focused around making physical modifications to campuses, like handicapped parking and wheelchair accessible buildings.
“Unlike students whose disabilities can be accommodated through a one-time expenditure of funds and administrative activity … students with chronic illness require accommodations that must continually be negotiated, adapted and arranged,” read a report by Lynn Fuentes, the founder and director of the Chronic Illness Initiative.
It wasn’t until the Chronic Illness Initiative that students with chronic illness received specialized attention outside of other disabilities. They received extended deadlines to offering online class options. The program even worked with students as they balanced the financial burden of medical expenses and college tuition.
Since the Americans with Disabilities Act of 1990, any institution of higher education that receives federal funding is required to account for students with disabilities.
“We want to work with all types of students with disabilities, so obviously chronic illness falls under that,” said Leora Simon, who has been a disabilities specialist at Northeastern’s Disabilities Resource Center for about a year.
Simon said the resource center at Northeastern has six specialists who are trained to provide counsel on different kinds of disabilities. A new specialist was just hired last semester to focus on students with chronic illness. She was unavailable for comment by press time, but Simon said the position will center on helping chronically ill students succeed.
However, Simon said the only way the DRC can help students is if they know who they are.
“In college, the student is responsible for identifying themselves,” Simon said.
Sometimes, however, students with chronic illness do not reach out for help because they do not want to be found by the DRC. Fuentes said she has seen students shy away from a disability diagnosis.
“They often don’t see themselves as disabled and don’t want to classify themselves as disabled,” says Fuentes. “A lot of times, they won’t identify themselves to the disabilities center.”
Some students, though, have decided to come forward, like Lilly Stairs, a Northeastern alumna. In 2011, during her second year at Northeastern, Stairs was diagnosed with both Crohn’s disease, an inflammatory condition of the gastrointestinal tract, and psoriatic arthritis, which causes intense joint pain and inflammation. Stairs had open communication with her professors.
“I really tried to explain to them what I was going through,” Stairs said.
To help encourage others with chronic illnesses at Northeastern, Stairs started the 50 Cents for 50 Million Campaign to raise awareness for people with autoimmune diseases like her.
“It is tricky when you have these invisible illnesses for people to understand,” Stairs said. “It’s very hard for people to understand when you ultimately look fine.”
