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Thursday, July 24, 2014

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Lauren McCarthy: Living with an invisible illness

By Lauren McCarthy, Columnist
Published January 22, 2014

At 18 years old, most high-school graduates imagine their soon-to-be college careers as a blur of caffeine induced all-nighters, nearly impossible exams, subsequent celebratory bar crawls, partying until 3 a.m. and sleeping in until 3 p.m. Though I was diagnosed with an autoimmune disease at 12 years old, I had an idealized vision of college in which I was perfectly healthy, disease free and dedicated only to my schoolwork and social life.

Unfortunately, my utopian take on the perfect college experience came to a screeching halt my senior year of high school as my condition became so exacerbated that I was forced to begin administering weekly self-injections to control my symptoms. And so it began: monthly battles with my insurance company, regular blood work, University Health Service providers who were unfamiliar with the medication and its side effects and endless trouble coordinating the shipment of the syringes with the mailing office hours in my dorm building.

I’m one of many students who have what is often termed an “invisible illness” — a condition that may not be immediately apparent. We are students who don’t appear to be physically ill, and thus, others assume that we’re just as capable as the average student. But we’re not.

As fiercely independent as I am, two-and-a-half years into my college career, I have finally conceded that I need just a little additional help — but is that help genuinely available to me? I’m constantly in the doctor’s office, whether for the treatment itself, the repercussions of the side effects, or to complete blood tests to ensure I’m healthy enough to continue to receive the injections. I’m chronically fatigued either from the medication or from the headache that is insurance companies, and all the while expected to compete on the same playing field as my able-bodied peers.

I’m now familiar with the Service for Students with Disabilities office, but I had no idea that the office even existed until my sophomore year — much less what services they provided. As I tried to explain to my professors what was affecting my performance freshman year, not one mentioned that there was an office through which I could “register” my chronic illness. Now having done so, I am still unconvinced of its efficacy. Is it sufficient information just to hand my teachers a note at the beginning of each semester? Will my professors understand that the occasional empty look in my eyes and obvious exhaustion are not because I was at Rick’s until final call the night before? Or have they become accustomed to the saturation and prevalence of these letters so that they’re no longer able to value them on a case-by-case basis? Additionally, what young adult will readily identify him or herself as “disabled?”

Undoubtedly there’s a population of students who would rather forgo the label and subsequent stigma than offer themselves up as a disabled individual. While I do not believe that’s well advised, it’s understandable. I refused to subject myself to even the thought, not because I view “disabled” so negatively, but because I did not want to issue myself a crutch.

In 2013, the American College Health Association reported that a combined 24.3 percent of college students reported having a chronic illness or condition ranging from ADHD, diabetes, epilepsy, arthritis and autoimmune disorders, to learning disabilities or psychiatric conditions. Comprising almost a quarter of college students, we are a collection of those with “invisible illnesses” who are vastly more prevalent than one might have imagined and arguably deserving of more defined support.

Acknowledging this need, DePaul University launched the Chronic Illness Initiative at the School of New Learning in the fall of 2003. The purpose of the initiative is the belief that students with chronic illness — who number in millions — often find their needs neglected. University-based offices for students with disabilities tend to focus on more easily identifiable conditions that can be helped by technological aids and existing programs, while the ever-changing needs of those with chronic illness are often misunderstood or overlooked. The initiative addresses these issues, designed to accommodate those with “invisible illnesses” and their waxing and waning symptoms.

The University should take a close look at this program, and adapt similar core values and initiatives. While students are able to register their chronic illness with the University, there is more to be done. Students could benefit from having a space to simply meet each other, share their concerns and frustrations and proactively seek modification of the existing system. The University’s Counseling and Psychological Services offer support groups for grief, eating disorders and social anxiety — but not chronic illness.

More often than not, health-care professionals at UHS are unfamiliar with the biologic drug that I’m taking and have prescribed medications that exacerbate my existing symptoms. Though the Services for Students with Disabilities office provides academic accommodations, they should expand to provide adequate health-care accommodations as well. Perhaps UHS should identify for students particular physicians who are most knowledgeable about chronic illnesses, and funnel those of us suffering from them through a separate scheduling process. Too often, due to UHS’s lack of understanding, I have been forced to outsource my care to other physicians and pay for their assistance as well as the University’s mandatory, nonrefundable “Healthcare Service Fee” — $349.80 included annually in and indistinguishable from my tuition.

Navigating my chronic illness with little support from the University is 18 credit hours on its own; however, with a few administrative changes, increased awareness and student advocacy, those with “invisible illnesses” may finally be able to find some relief.

Lauren McCarthy can be reached at laurmc@umich.edu.