The Social Aspect

Hello everyone! First off, I would like to say that I am going to try and update this blog every Wednesday from now on, but that might change to every Friday later. It also depends on when my midterms/finals are, but I will do my best :)

So, although I feel that I have many things to share about my life living with heart disease and how it has effected me, I struggled to figure out what to write this week. I think I will try to write about the "social" aspect of it, and how it has played a role in my social life.

As my dad likes to constantly remind me, no matter how much I wish it weren't so, I am not a "normal teenager." Many parts of my life are actually as normal as can be, which is obviously the goal for people living with chronic illness and the goal of my doctors with my treatment plan--for me to live a life as normal as possible. However, I always have to make sure that I am not over-exerting myself and doing anything that might cause my heart to have irregular rhythms. Because I have a hidden disability, I have the privilege of hiding my illness when I meet new people and introduce myself to others, and I get to, for the most part, decide who knows about my heart disease or not.

Starting college was the first time I finally experienced how my illness effected me socially. In high school, all my friends and majority of people knew about my heart disease, which makes sense since I did miss a lot of school. However, in college, I was starting a new blank page. Of course I wasn't going to go around and tell everybody I met that "Oh, by the way, I have heart disease" but I was faced with the decisions: Who do I tell? Who can I trust? How will they react? My parents have always told me to hide it as much as possible, and only tell people who need to know-- for example, my roommate, and my RA. I guess they are scared of people reacting badly and will somehow use it against me, but what I have come to learn is that people--my friends--are usually understanding and compassionate. Although it is awkward at first to bring it up in conversation, I made new close friends in college and shared with them the hidden side of me. When we would go out and have to climb the horrible hills at UCLA, they would stop and ask to make sure that I was okay and not too tired or that I was not exerting myself too much. As I have mentioned before, I was extremely lucky and managed to be paired with roommates who were so understanding and kind that they even stayed at the hospital over night with me while I waited for my mom to fly down and be with me. My friends all visited me while I was in the hospital during my freshman year of college, bearing generous "Get well soon" gifts and presents. Even for my spring break camping trip last March, it was definitely difficult to complete so much hiking and activity but I had a friend who stayed back with me at my pace and I was able to have a very enjoyable time despite the fact that I could not keep up with the rest of the group without over-exerting myself.
I guess what I'm trying to say, is don't be scared of letting your child live as normal a life as possible, because there will always be people and friends who will help guide their way and look out for them. I know my own limits, and even if I sometimes think, "Oh, maybe I can do it" there is usually a friend by my side who asks, "Are you sure?" and I would reconsider and not do it. I don't go out as much as my friends do, and I don't drink at parties. I can't go on roller coasters or go skydiving, and at concerts I have to be far enough away from the speakers so the bass does not vibrate my chest/heart. I get tired faster than a normal person, and there are times when no matter how hard I try to keep up with my friends to not miss out as much as possible, I have to stop and rest/recuperate or else I start to feel a lot of irregular rhythms in my heart.

However, despite all these limitations, and with the help of my amazing friends + support group, I try my best to not let my heart disease define my life or who I am. I try my best to live my life to the fullest, but always to be aware of my limits and that of course, I am not a completely "normal teenager."

A picture of my best friends and I that I have made at UCLA :)