I am a glass half full kind of person. Regardless of what I’ve been going through over the years, I’ve learned that there will always be someone enduring even greater struggles. Yes, I have barriers and limitations with my heart defect that affect my social life. For example, if I happen to fall or trip, I have more concerns than others because I am on a blood thinner, which means my bleeding won’t stop easily. I often ponder when precisely the best time is to disclose my heart defect to new friends, it is a tough balance between realizing that it is such a significant part of my life and who I am while also avoiding the “poor me” mentality that can come with the disclosure. But my fellow young adult heart patient peers and I often ask ourselves this question: If it wasn’t for our heart defects, how exactly would our social lives be different? Would we be playing contact sports or having more than two alcoholic beverages when we’re out with friends? For me, the answer is easy. No, it wouldn’t be much different.
Let me address one barrier at a time. First: restrictions on contact sports. Growing up, I was a stereotypical “theater geek”. The closest thing I got to contact sports were dance classes and musical theater choreography, and my motto was often, “I can’t, I have rehearsal.” It was my passion. Even if I could play sports, like soccer or softball, I don’t think I would have. I participated in gym classes in elementary school and had a very understanding gym teacher who allowed me to rest when needed. The backlash came from my peers, who often couldn’t understand why they could not sit down and rest while I could. But there were other times when my close friends ran the last length of our mile run right along side me just so I wouldn’t be alone. It was recommended by my teachers and doctors that I be excused from the more rigorous gym class curriculum in middle and high school, but I still remained active, walking, bike riding, swimming and dancing as often as possible. I’ve met many heart patients who are bothered by not being able to participate in contact sports, but I’ve dedicated my extra-curricular time on other activities that are more heart-friendly and I thoroughly enjoyed.
The second barrier that has had an effect on my social life is going out and having a good time with friends, which is a big part of most young adult lives. I’ve developed the mentality that I can still do this while not jeopardizing my health. Even in college, I preferred attending a movie night with friends than going to a party and I was thankful to find groups who provided my kind of social events. Even though the decision was easy for me, it was more difficult for some of my peers to understand. I’ve been questioned multiple times by friends, been told that, “I have a family member with a heart defect that drinks a lot, why can’t you?” I’ve been told that friends are concerned that I’m not having a good time because I am not drinking as much as they are. I care too much about my heart, effects on medications, and my health to do that to myself, and I’ve learned that my close friends not only don’t question my personal decision not to drink excessively, but support it wholeheartedly.
I have been so grateful over the past 13 years to develop a strong family of fellow heart patients. Thanks to Camp Odayin, a camp for kids with heart conditions, where I began as a camper and now remain involved as a volunteer counselor, I have close friends that share my mindset about our barriers as heart patients. We may not be exactly like other young adults, but we still live full and active lives.
As a counselor, I’ve continued to enjoy watching campers form these bonds and begin to realize just how important these friendships will be throughout their entire lives. I’ll be attending the Adult Congenital Heart Association’s 8th National Conference for the first time in a couple of months and I’m excited to connect with even more fellow heart patients and professionals and adding more members to my “heart family.” The limitations and barriers, in my mind, are all worth it because of all the amazing people I’ve met because of my congenital heart defect.
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