Updated: Feb 13, 2020
I have never wanted people to feel sorry for me. I have never wanted to be pitied. I don't like to be patronized or disregarded. There have been times when I have struggled to express my feelings or thoughts in order to fit in or be "normal". I've shoved them down because I felt that if I spoke up, someone might think of me as less than, or as fragile, or even broken. So I just didn't say anything. I let things that bothered me roll off my back, and at times risked my own health and safety to try and do what I thought others wanted or expected of me.
As I've stepped into adulthood - adulthood with CHD, I have learned that not speaking up does a lot of damage. I have learned that standing up for myself, for my heart, and for my health is essential. I have learned that advocating and bringing awareness is a way of ensuring that I continue to survive and to thrive. So I stopped silencing myself and I gave my CHD a voice. And here are 4 things that CHD wants you to know.
1. Tired is NOT a Competition When someone says, "I'm so tired", most people respond with "Me too" and both people being to list all the reasons they are tired. When someone with a heart condition says, "I'm tired", what they really mean is, "My body is having a very difficult time keeping up right now". Think about it. Living with half of a functioning heart means that the remaining half is doing double time. It means that a lot of the energy that I do have is being used to keep my body going and keep myself alive. It means that I'm not about to get into an "I'm more tired than you" competition. Because I don't have the energy for that. And because to be honest, I'd win.
2. Go away Negative Nancy If we are being honest, we all have things about ourselves that we don't like. Things that we want to change or that we are unhappy about. Somethings are out of our control and some are just not. There are many, many times when I wish I could change the fact that I have a heart defect. It isn't something I asked for or did to myself. And it's something that I can not change. So when people complain or get upset about their imperfections or flaws...the ones that they have the power to change...I get frustrated. Because there are things in my life that are very much out of my control, and I'm making the most and the best of it. So please, keep your negativity away from me while I'm trying to bask in the positivity of living despite the things I can do nothing about.
3. This Isn't Dramatic I'll admit. I can be dramatic. I'm loud and I'm enthusiastic and sometimes I even exaggerate. (Editors Note: a lot of the time) Dramatic, I know. But one thing I'm not dramatic about is matters of my heart. That's real. If I say that I can't breathe, I can't. If I say my chest hurts, it hurts. If tell you that I'm tired, I'm tired. It's not about attention. It's not about getting my way. It's not about getting out of something. It's not about being dramatic. It's about living in a body that sometimes fights against me and what I'm trying to do. It's about sometimes feeling like I won't be able to accomplish what I want. It's about the reality of living with a congenital heart defect.
4. The Power to Make Change A lot of my life I've felt alone. I felt that since there was nothing I could do to change the fact that I had CHD, that I should just learn to deal with it. But CHD affects 1 in 100 people. So being and feeling alone is something that simply doesn't have to happen. Not doing anything about it didn't feel like a good option since there were so many others out there who were experiencing similar things. I decided that my perspective (and my actions) needed to change.
A few years ago I started writing down my story in a blog and sharing it with whoever was willing to read. I got involved with my local American Heart Association and other organizations that bring support to families and people affected by CHD. I've met a community of people who are just like me in many ways. And together we are making changes. We are letting moms and dads know there is hope for their beautiful babies to grow up into thriving adults. We are letting little girls and boys know that they are so far from alone, and that there are people who know exactly what they are going through. We are sharing stories with one another of our day to day lives and finding a commonality in living with CHD. We are spreading awareness for CHD all over the globe so that people can know what its like, what to look for, and how to help. We are reminding people that despite a difficult diagnosis, there is so much hope. Hope for life, hope of making a difference, hope of bringing about change, and hope of one day finding a cure.