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Invisible illness: a call for understanding

| Wednesday, March 29, 2017

There is an invisible under-culture at Notre Dame.

Students in this under-culture are unable to live the stereotypical Notre Dame life characterized by a vibrant social life, numerous extracurriculars and long hours of homework. But for students with autoimmune diseases, like myself, full participation in these areas can be inconsistent at best and impossible at worst.

Imagine to everyone else that you look fairly normal. Just like many others, I walk to class with my headphones in and a North Face jacket on. There are not any obvious sign of illness. Most people around me believe that I am fine.

However, most days, my day will begin with exhaustion after a consistent eight hours of sleep due to chronic fatigue. Less than eight hours of sleep results in the inability to concentrate on anything. If I do get eight hours of sleep, though, I try to work through my fog of exhaustion with constant breaks and food. By 10 o’clock at night, my energy is gone and even though I want to do more, I cannot because my body is slowly deteriorating from the day’s work.

Chronic fatigue is difficult for a college student to understand because everyone is tired. My exhaustion goes beyond lack of sleep. This fatigue is debilitating due to headaches, brain fog and pain. Sleep cannot cure it; sleep can only help diminish the symptoms.

This article is a call for people to understand and see those who are invisible.

Today, approximately 50 million Americans have autoimmune diseases. Many people still do not know or understand them. An autoimmune disease in its simplest form is a disease in which the body’s immune system attacks healthy cells. What this definition does not encompass is the pain, exhaustion and loneliness associated with a disease.

Here at Notre Dame we pride ourselves on being a community. Just as we have realized the importance of minority groups to speak out due to recent events, I and others like me have realized now the importance of asking people to practice compassion not pity, empathy rather than judgment. Today, I am calling on each one of you to practice compassion and empathy when you see a student who might not look sick but misses class frequently, asks for extensions or shows signs of exhaustion. Loneliness is one of the most common experiences that all people with autoimmune diseases experience. Often times I disappear for days because it is easier to deal with my health behind close doors when all I actually want is for people to come over and practice compassion and empathy with us. Today as a Notre Dame community, we need to reach out to those who suffer from these invisible illnesses so that they are finally visible.

Thursday, March 30, is Invisible Illness Awareness Day. I encourage each of you to look for students passing out “invisible” bands as well as a panel in which students and faculty like myself will speak about the difficulties living with a chronic condition.

In order to be a true community here, it is necessary to understand all people, even those who are invisible. Through this day, I hope that there will be a new culture of understanding: understanding the loneliness, the frustration, the pain and the unknown. Mostly though this day is an aim to see the invisible so that one day this invisible under-culture will be visible.

Rose Ashley


March 27

The views expressed in this Letter to the Editor are those of the author and not necessarily those of The Observer.

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