What It's Like When Chronic Illness Is Always Lurking

Jennifer Clare Burke chronicles her struggle with lupus, and the challenge to keep on keepin' on.

By Jennifer Clare Burke
Add Comment Add Comment | Comments: 7 | Posted Sep. 12, 2012

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You wouldn’t think I’d have to learn this the hard way, but since I did, let me share: Never schedule an anal probing on Friday the 13th.

July, 2012: Moments before my colonoscopy, two techs on my right and an anesthesiologist on my left gazed benevolently at me as I tensed in the gurney.

“There’s a puddle of blood near my butt,” I said. “I don’t want you to be concerned by that.”

“You’re bleeding?” asked the older tech.

“My IV malfunctioned when my wrist was near my tush. It was all blood spurts and hilarity. The nurses wrapped the bloody stuff in a pad so I wouldn’t see it.”


“I’m in the mood to take a nap.”

“We’re in the mood for you to take a nap,” agreed the anesthesiologist, as the three of them gently rolled me onto my side. When the whitish stuff they injected into my arm began to irritate the vein, I felt at least a half-second of empty, divine falling before the nothing.

In the summer of 1998, I still thought of myself as a healthy 24-year-old. And yet I often felt an increasingly nagging, nondescript sort of awful as I walked to class from the parking lot of the university where I taught composition to aspiring med-school students. I felt feverish and oddly fatigued.

On a gut level, I knew something was wrong. Still, I looked for mundane explanations. Surely my busy schedule or my workouts were causing the joint and muscle pain that had been gradually getting worse. With fair, sensitive skin, I blamed the unusual rashes on any number of irritants. Finally, though, I had to admit that there was simply no justification for why schlepping students’ papers and books to and from class created an agony in my hands, elbows and shoulders.

I went to see my primary doc. Finding my joints red and swollen, she tried to manipulate my knuckles; I jumped and instinctively pulled my hands away from her. “I think,” she said, “you need to see a rheumatologist.”

“What’s that?”

“Someone who treats autoimmune disorders like lupus, which might be going on here.”

“What’s that?”

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Comments 1 - 7 of 7
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1. ryan said... on Sep 12, 2012 at 10:12AM

“Oh God another woe is me medical sob story on the cover of the PW. This isn't even good writing or make a bigger point it's just a pity party. This paper is terrible anymore, just pull the plug.”

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2. Sue said... on Sep 12, 2012 at 12:24PM

“I think it's important for young people to understand that they simply are not infallible, so I am glad she is giving this kind of reality check to her students.
Sorry to hear that Jennifer has had to deal with such an awful disease. I didn't know before this story just how all-encompassing it can be and how something that seems as simple as a colonoscopy can turn into something a million times more complicated thanks to the lupus.”

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3. Kristin said... on Sep 12, 2012 at 04:10PM

“Ryan, I'm glad you're so healthy that you can cast aside those of us with health problems. Chances are, you've had an extended encounter with one of the 1.5 million people with lupus. Try being a little more empathetic to the those living with serious chronic illnesses.”

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4. Megan said... on Sep 12, 2012 at 05:38PM

“@Ryan, yes, I'm sure the quality of writing can be accurately gauged by someone who thinks "this paper is terrible anymore" is correct. Bravo on saving everyone time.

I was fascinated and horrified by Jennifer's story, and extremely impressed with the attention to all the little details that healthy people don't consider and too often take for granted. Without sounding recursive, systemic disease affects everything. My sympathies and admiration on your strength in the face of this adversity.”

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5. Kman said... on Sep 14, 2012 at 04:29PM

“Once or twice in a lifetime, you come across an artist, an author or a musician that you just completely "get." For me, Jen Burke is one of those artists. Her book is a jewel. After you are done reading her work the world looks much more beautiful, so much more interesting and delightfully silly. A Life Less Convenient is a beautifully written piece of generosity, from a very talented author.”

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6. Brian said... on Sep 20, 2012 at 10:03AM

“Lupus, like almost all health challenges, including MS, HIV, obesity, cancer, heart disease and diabetes, can be reversed by leading a raw vegan lifestyle. This lifestyle enables me to work 100 hours a week with no lulls in mental focus and crisp mental clarity. Find out more at www.Fruit-Powered.com. Arnold's Way of Lansdale, Pa., offers more than 750 YouTube videos on healing from health challenges.”

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7. Doesnt Matter said... on Jan 16, 2013 at 02:14PM

“To Ryan; First off Ryan, let me start off by letting you know that I used to know this auther and have to tell you to this day she is the most amazing person I have ever met. Your ignorance amazes me and all I can ever hope for you is that one day you have the opportunity to meet Jenn in person. I have had an intersting life myself and she makes my struggles look like nothing. She is someone that will always hold a special place in my heart.”


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