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Why I Struggle to Introduce My Illness to Others

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To be completely honest, I have no idea how to introduce myself or the disorders and conditions I deal with on a day to day basis. It can be challenging for anyone, myself included, regardless of the condition, disorder, or disease, to primarily categorize themselves upon first introduction.

Do I say, “I suffer from…” or “I have to deal with…” or even something sassy to illicit a laugh when explaining a potentially life-threatening condition? I feel as though my vernacular doesn’t quite grasp the message I intend to get across. I do suffer from, thrive because of, have learned empathy from, been beaten down from, and am partially defined by my multiple conditions. I am a lucky survivor of type 1 diabetes of nearly 16 years, celiac disease, familial adenomatous polyposis and am only 20 years old (with no complications).

My point being, I never know the verb to use to characterize the conditions I have when (and if) I decide to vocalize about my body. This is solely because it immediately defines my current relationship with my disorders/disabilities/insulin pump. However, I need to keep reminding myself, to the “normal” person, these introductory words may have little to no basis to them. Yet, to me, they are foundational in what help to make me, me.

This seemingly odd marriage between my conditions and I is fluid. It’s dynamic. Like any condition, be it physical, mental, or emotional, some days are good. Some days are just horrible that I wouldn’t wish upon my worst enemy. When someone asks me in person, I usually just respond with the simple, “I have these conditions, and yes, it is a lot, but I look at the silver lining” and I then elaborate on all the wonderful accidental things I’ve learned because of them.

Then there are the bad days. The days my physical disorders manifest mentally. I don’t think of myself as a warrior, fighting to get my H1a1C level below a certain number. I think of all the complications that come along with prolonged type 1 diabetes or consistent gluten contamination. The exchange between us is ever-changing and evolving. No two days are exactly the same, and any person with a chronic or rare condition can attest to this. It is simply unpredictable.

One question I found that people tend to silently ask themselves, regardless of the condition, is “Do I own these conditions? Or do they own me?”

It’s a mental struggle many people deal with on top of their conditions. Even so, this internal tug-of-war is more silent than you may think. These thoughts are not usually given the time of day, and consistently take a back seat compared to say, my university finals. Luckily, these reflections don’t really surface too often in my thoughts. But as a growing, young adult, who is just starting to accept myself and learn of my true passions and beliefs, I sooner or later, can’t help to wonder if I define my condition or if it defines me.

Originally published: October 18, 2016
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