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Why I Don't Say I 'Suffer' From a Rare Disease

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There are days when I go about life, ignoring all of my troubles. I ignore them because it is not necessary to bring my insecurities into consciousness. I get on the college shuttle to go from campus to campus, and feel just like one of the crowd. I am simply another one of the 40,000 college students at my university. There are other days when I feel the stares. I walk on the bus and I see one, two, three pairs of eyes flutter towards me and the back and I return their glance. And on those days, I guess that they do not stare because they are people-watching. Some days it gets to me; however, it is more often that I just brush it off and go about my day. This is my life, and I continue living.

I was recently featured in two local magazines after bringing a genetic screening event to my university. Jewish students could get screened for diseases more common in the Jewish population, such as Tay-Sachs disease. We got 50 students signed up free of charge, which is an excellent accomplishment. Two local newspapers wanted to interview me about the event, and both became less about the event, and more about my lipodystrophy. That is OK—I’ll gladly take the opportunity to advocate! One reporter was a family friend, and the other was the human embodiment of Rita Skeeter from the “Harry Potter” series. I knew from the time the interview started that I would dislike the way the article would turn out. I spoke to Rita for 10, maybe 15 minutes, and spoke as smoothly as I could, to “prove” my normalcy and my intelligence, all at the same time. Still, when I received the link to the paper, I braced myself to see what real-life Rita had whipped up. Though she got a few details mixed up, there was one caption, underneath a picture of me, that rubbed me the wrong way.

“Dena Winchester, who suffers from a rare genetic disease…”

Let me tell you, I do many things. I write, I study, I socialize, I sleep, I study more, I laugh, and I study even more. If I had to choose one action to do as little as possible, one verb I never want to be associated with, it would be “suffer.”

I immediately pulled up a draft to send to the editor. For a moment, I struggled with what to say—how can I make a stranger understand why I despise the word “suffer” so much?

“Suffering” makes me thing of a child with graying skin, unable to speak, eat, or sleep, strapped to a hospital bed. “Suffering” makes me think of a family grieving the sudden loss of a loved one, killed in a horrible car accident or shootout. “Suffering” makes me think of war, starvation, and genocide. “Suffering” makes me think of calculus and organic chemistry.

I do not suffer from a rare disease. I live with it. I grab it by the collar, scream “no,” and keep walking on. I go to school, get an education free of financial aid, go to the dining hall, eat lots of food with friends, go to Shop Rite and the mall and spend the money that I am fortunate to have, and can walk down the street with a smile on my face. I am very fortunate to have the life I have, and I do not suffer. It bothered me that this journalist could not see that upon interviewing me, especially when I did not expect my medical condition to be the focus of the article. I thought it would be the wonderful thing that I accomplished, bringing an important event to my school and getting help for 50 of my peers. I did not want it advertised to an entire community that I was “suffering” from an awful disease, when it could be advertised that I could be an inspiration to my school community.

“I do not suffer from a rare disease, I live with it.” That is what I told the editor in my email.

And wouldn’t you know, they changed it.

This story originally appeared on My Skinny Story

Originally published: July 18, 2018
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