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When People Misunderstand Your Invisible Illness

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I find myself sitting in yet another hospital waiting room. I’m the youngest person in this department by a good 15 years.

“Poor thing,” I hear others say. “I wonder what’s wrong with her.”

Frankly, it’s none of their business, and I’m killing it in Candy Crush. Finally, they call my name and take me back to pre-op. The nurse is an upbeat redhead with an Irish accent. We go through the basics: date of birth, emergency contact, order for labs, and instructions for before and after the procedure.

“So let’s see, my dear. Getting a port, are you?”

I shake my head “yes” as it fills with questions.

Will you be able to see it?

Is it going to leave a big scar?

Are strangers going to stare?

I remind myself of the constant blood draws, CT scans and MRIs — on top of my IV hydration and infusions. Since being diagnosed with Crohn’s disease, a form of inflammatory bowel disease (IBD), this has become my reality. It’s quite common for many IBD patients. My gastroenterologist has been talking to me about this type of intervention, a port, for some time now. I think the thought of a foreign object in my body — my chest of all places — has kept me away from this appointment.

Port, PowerPort, Port-a-Cath — it’s called many different things, but it serves the same purpose: a direct line into your blood stream for delivering medicine, among other things. I notice her glancing over my chart, searching for a clue as to why I’m sitting across from her.

Crohn’s disease. “Well, you look pretty healthy right now.” I take a deep breath and smile, trying not to react to her comment. It can become familiar when you have a chronic illness. Many of us hear it often. Some people mean well, but with others it can feel more accusing. There’s nothing more frustrating, I feel, than to be told you don’t look sick when you’re falling apart on the inside.

“All right, dear, we’ll see you tomorrow.”

I’ve had my port for almost a year. I can see its purple glow through my skin. It feels so foreign. It is foreign. People stare, and some go out of their way to avoid me. I didn’t expect to feel so insecure about its appearance. With Crohn’s — with any type of inflammatory bowel disease — so much isolation can go along with these conditions. This was just one more thing. The decision to get the port placed was a difficult one — one that many with IBD may have to make as well. Just remember that not every illness is visible at first glance. So sensitivity can go a long way, especially when it becomes more visible for the first time.


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Originally published: October 20, 2016
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