Why I No Longer Keep My Disease a Secret
Dear Hyper IgE Syndrome,
I remember when we first met. I was a preteen. I didn’t understand what role you were going to play in my life and my future. Were you always going to be around or would you leave me one day? I didn’t know how to handle you sometimes. You’d show up in completely unexpected, different ways and often threw me for a loop. You’d appear out of nowhere. It was inconsistent and frustrating. It’s crazy to think that when you showed up is when I felt the most alone.
I tried my best to accept that you were just going to be a part of my life, but I wasn’t ready to tell my friends or anyone about you. I was insecure and ashamed. You definitely made going away to college pretty hard for me, and I did all I could to keep you a secret. I didn’t want anyone to know about us and the affect you had on me — I just wanted it to remain low key. I wanted to enjoy my college years and not feel tied down to you.
I wanted to be normal and fit in, but you refused to let me go. You’d show up and make me change what I’d wear every day. I’d have to cover myself up. I was thankful when it rained in the summer so I didn’t have to be seen with you in a bikini on the beach.
Things were a little rocky towards the end of 2011 and beginning of 2012, and I wasn’t sure what was going on. That February, you came over and swept me off my feet. I’d never felt the way you made me feel that day, and it’s something I’ll never forget. It was so out of the ordinary and made me so unclear of where my future was going. I was pretty terrified.
You were giving me all of these signs, and finally I decided to listen. I knew I needed to embrace you, but it was easier said than done. I’d kept you as a secret for as long as I’d known you, but when you came in so abruptly that day in February, I knew my life would forever be changed. I started telling my close friends about you, I started writing about you and realized a huge weight was lifted off me. I never intended to lie or fib; I just thought life would be better off if you and I remained a secret. I didn’t realize that by sharing you with the people I love, as well as with strangers, that I could inspire and motivate other people to share their stories about a relationship like ours.
I used to hate you. I did. It took a while for me to realize that you only came at me to help me. You helped me evaluate my life and realize taking care of myself needed to be a priority. You wanted me to be fully authentic and somehow you knew that was going to be the turning point. You were right. You knew I would start taking care of myself if the world knew about you. No more hiding. We were a team, and we were going to get through life together. Do I sometimes wish you were with someone other than me? Of course, but most of the time you keep your cool, and for that I’m grateful. I know others in relationships like ours, and they’re struggling to get by in life.
I’m grateful for you for coming into my life and showing me what it’s like to be a confident person. I also learned (and this certainly came with age) that I’d rather stand out than fit in. Normal is boring, and I certainly didn’t want to be boring.
I just ask that you don’t come back and sweep me off my feet like you did a few years ago. You made life really hard for me and made me question everything. I’ve learned a lot about myself since you came into my life 19 years ago. No need to keep reminding me that you exist; I’ve figured out how to make our relationship work and would like to keep it that way.
With love and hope,
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