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Invisible Illness Awareness Day panel debunks ailment stereotypes

| Friday, March 31, 2017

A group of Notre Dame students officially known as “the Invisilillies” conducted a panel recognizing the University’s first “Invisible Illness Awareness Day.”

The panelists described how these ailments affect their daily lives and debunked the myths associated with the appearance of being sick.

Senior Francie Fitzgerald was diagnosed with postural orthostatic tachycardia syndrome (POTS) — an autoimmune disease that causes her body’s immune system to attack healthy cells — as a sophomore in high school. One of the disease’s many symptoms is compromised blood and oxygen flow to her brain and extremities.

Because of this problem, Fitzgerald said, “many POTS patients pass out each time they speak,” and the array of challenges Fitzgerald’s condition has caused led to her getting a service dog named Paddy in her sophomore year at Notre Dame to assist her in her daily life.

Each panelist acknowledged a myth or stereotype of invisible illness they proved wrong. One thing common misconception Fitzgerald cited is that because she looks healthy, her “dog must be a comfort animal or psychiatric service dog.” Those kinds of service dogs play important roles too, Fitzgerald said, but this comment causes people to overlook her illness because it is not visible.

Senior Lauren Janek has several invisible illnesses, including Crohn’s disease and fibromyalgia. For her and the other 12 Invisilillies, she said, hearing the statement “but you don’t look or act sick” has been frustrating.

“What are sick people supposed to look like?” Janek said. “Most of the time when I’m not feeling well, it’s behind closed doors. So yes, we look perfectly fine when you see us in class or see us out, which is really confusing. This disease isn’t our defining characteristic, but it would be nice for people to know.”

Diagnosed during the summer before her freshman year at Notre Dame, sophomore Rose Ashley has chronic fatigue syndrome and a rare disease called IGA Vasculitis, which causes bleeding beneath the skin as the body attacks small blood vessels. Ashley said people often contribute her fatigue to being a typical college student.

“My exhaustion is debilitating; it’s not just something I can get over,” she said. “Yes, I’m a college student, and yes, I’m tired, but that is not necessarily a causal relationship.”

Sophomore Claire Marks has endured similar criticism in dealing with her illness. Diagnosed with Fibromyalgia and Hypothyroidism at 15, Marks said, people often tell her she is “too young to be sick.”

“Being told you don’t understand pain and you’re too young to be sick is really frustrating,” she said. “Just because an illness is invisible to everyone doesn’t mean it’s not there.”

Senior Jackie Johnson suffers from cystic fibrosis (CF), a disease that causes a thick mucus buildup in the lungs and other organs. The effects of CF on her daily life include taking pills before meals and using a respiratory machine for an hour each day to clean her lungs. Because CF is a common genetic disease, Johnson said, people often try to compare her predicament with someone else they know who has the disease.

“Every condition is so different with every person, and each person has different levels of openness when it comes to their illness,” she said.

Sophomore Amy Mansfield spoke about her struggles with Type 1 Diabetes, which forces Mansfield to check her blood sugar five to eight times a day due to the risk of it fluctuating too high or too low.

“Every day is different, so I’m just trying to find a perfect balance between food, insulin, stress, activity and whatever else life throws at me,” Mansfield said.

While many people believe all her daily routine consists of is pricking her finger and using her pump, Mansfield said this is not true. Mansfield’s diabetes now prevents her body from telling her when her blood sugar is too low. To compensate for this, Mansfield now has a service dog, Juniper, who is able to detect an indicating chemical through smell when Mansfield’s blood sugar has dipped too low, and then pokes at Mansfield’s leg with her nose or paw to remind her to check her blood sugar.

“She has likely saved my life countless times,” Mansfield said.

Diagnosed with Crohn’s disease in high school, Keenan Hall rector Noel Terranova said his illness has played an important role in his life, as in college he became so sick he could not complete his semester abroad, and in his first year as rector, his disease flared up and led to a three week hospitalization. Following this incident, Terranova said he was inspired by how the Notre Dame community rallied around him.

“People were able to know and understand the invisible illness that I had,” he said. “Keenan residents and other students came forward to me about their invisible illnesses.”

As the group of of Invisililies is all female, Terranova also spoke specifically about the stigma of facing invisible illness as a man. Quite often, he said, he would “pretend that it didn’t exist and just be tougher.” That mentality as a man “can be a lie we tell ourselves,” he said, and called upon men of the Notre Dame community suffering from illness to develop networks of support with each other, with rectors and with the housing department, who is accommodates students with a variety of needs.

“It’s really important to have networks of support, for people in your community to know what you’re going through,” said Terranova.

Gabriela Leskur, a fifth-year who suffers from a blood clotting disorder, was recognized  for her honors thesis on invisible pain. Her work, a series of three films detailing people’s personal experiences with invisible illness, is on display from April 7 until May 21 in the Snite Museum.

Dr. Anselma Dolcich-Ashley, an assistant professional specialist in the Glynn Family Honors program and the mother of panelist Rose Ashley, closed by thanking the panelists for their bravery, and recognized the importance of their shared stories.

“You guys are teaching us to how to be empathetic, because we don’t know what to ask,” she said.

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