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Posted on 25. August 2011

Being Honest

By Kinsey Moore

If I knew then what I know now, I would not have worked so hard to hide my illness from everyone.

I went to a very small private school for my entire middle and high school education. This meant that not only did everyone know everyone else, but secrets were a rarity on campus. To an ill child whose only interest was to be viewed as “normal,” that was a very frightening concept. I had to miss school at least once a month to get my infusion, and when people would ask where I had been, I always answered very vaguely with “the doctor.” No one pried for more information, so I would usually leave it at that and continue on with my day.

That whole act worked very well for me until one drastic change happened: My little brother started attending the same school. Garret, who is two grades below me, had not yet been diagnosed with an immune deficiency, but he was still ill very often, which raised concern from his teachers. My mom would call a meeting at the beginning of the year to tell all my teachers about why I would miss class and to ask them to not mention my illness to anyone else because of how cautious I was about who knew. And, no one ever spoke a word about my illness in front of me, but I later found out that one of my brother’s teachers had said something about his illness in front of his entire class. I was devastated. I went home thinking, “Oh my God, everyone is going to think I have AIDS. Everyone is going to pity me. No boy will ever like me!” (Of course, being 14 years old, that was really my main concern.) When I went back to school the next morning, I was prepared to set everyone straight. No, I didn’t have a contagious illness that I was at risk to spread to the whole campus. No, there was no need to feel bad for me. I waited and waited, yet no one said anything to me. The next day, it was the same thing. I had been so worried about what people would think, so I lied to shelter myself from all of the pain of being teased and rejected. Yet that never happened.

People did end up asking me questions about why I was sick, and for the sake of simplicity, I always answered: “My immune system doesn’t work right, so I get sick easier than everyone else.” And that seemed to be good enough for my friends. No one judged me, and no friends abandoned me. In fact, I think I ended up gaining a lot of people’s respect because they found inspiration in the fact that I was so “normal” with a chronic illness.

Looking back, I now realize that it was silly to try to hide my illness; it is and will forever be an integral part of who I am. I don’t let it define me, but at the same time, I embrace what I have been able to receive because of it. I have met so many amazing people, traveled throughout the United States, and discovered a strength in myself that I think a lot of people are never able to uncover. I would encourage anyone who is struggling with telling others about their illness to just be open. The people who matter will understand, and those who don’t aren’t worth the effort.

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Comments (2) -

Jenny Gardner
11:35 AM on Friday, August 26, 2011

Kinsey:

I am a friend of your Mom's through IDF.  She has always talked about what a great writer you are and this article proves it.  I'm an adult with this disease and I didn't figure out what you said until much later with my diagnosis.  I always thought everyone would assume I had AIDS too.  When I did fuigure ir out, what a relief.

Your mother speaks of you so much and now I can put a face on her beautiful daughter.  If you are anything like your Mom, then you are very special.  You Mom has become very special in my life.

Thank you for sharing.

Brandi
8:22 PM on Thursday, September 01, 2011

Great Job. I couldnt have said it better myself... I found out about my CVID when I was out of school. I have found that 90% of people understand and are very concerned about my well being the other 10% dont care or I lost them as a friend!!

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