Teens Dealing with Congenital Heart Defects

By Lindsay Davis

Your high school classmates are picking out prom gowns, and you�re donning another hospital gown. They�re choosing colleges, and you’re meeting with your medical team to discuss your treatment plan. Getting a heart disease diagnosis at any age is hard, but it�s especially difficult on teens.

At 17 I was diagnosed with hypertrophic cardiomyopathy. I was on the edge of adulthood but not yet fully equipped with the tools to handle it. Like most of us, my first experience with heart disease was hearing of an older relative with a heart ailment. When they discovered my condition, I was given pamphlets upon pamphlets with clinical information from my cardiologist but I had no peers to talk with about my �daily struggles and fears.

To the newly diagnosed patient; I want you to know that you�re not alone. Heart disease is scary and by no means easy. Many years later I�m still trying to figure things out. But I want you to know a few important things I�ve learned since my diagnosis.

1) You will get through all of this. The shock of the diagnosis will fade, however, the pain might still remain. It�s all part of the process of accepting a new normal. It�s reasonable that it will take a while for reality to set in, but when it does, the healing can begin.

There might be byproducts of your condition like anxiety, depression, rude doctors or relatives and hours upon hours of tests that can seem overwhelming. Restructure them as opportunities for growth and learning. Deepen your understanding of yourself, others and the world around us. There are hidden blessings that come with all hardships in life, such as strength, wisdom and empathy.

2) Your head is probably spinning right now, trying to understand anything surrounding your disease, but that’s OK. Soon you�ll become a pharmacist and a doctor without even having to go to med school. You’ll understand your disease better than your doctor. Knowledge is power, and so is becoming an expert patient involved in your own healthcare. But don�t let your diagnosis dictate your life. You are so much more than a cluster of mutated cells in an organ. Your true self is that deeper entity within that is perfectly whole and well no matter what you are experiencing.

3) Not many people will understand the things you are going through. In their world, young people don�t get diseases like we did. You will probably get some rude comments that might make you angry or cry. It�s alright to be hurt; they just don�t understand. We don�t even understand everything going on with us at times.

I�m an anomaly and have been lucky enough to almost always be surrounded by people who seek to understand my disease and not define me by it. I�ve only encountered a boyfriend with parents who had a hard time accepting it. At first it made me feel so small that every other trait I possessed was trumped by a medical condition I had no control over. However, It was through this experience that I learned that these negative interpretations are more a reflection and educational ignorance of the person judging you rather than the attributes you have to offer. Seek to educate those around you, but don�t take it personally if they don�t elicit a response of compassion or empathy. It’s just a lack of understanding.

4) Others may say �you�re strong for someone so young,� and call you an �inspiration.� It�s a very sweet sentiment but you don�t always have to be strong. Faking smiles to make other people feel more comfortable will only make you feel worse and more alone. You�re allowed to show weakness or cry. You are not expected to be anything but yourself. You are not expected to put on a show.

5) Find your allies. Social media is a valuable resource to connect and empower patients. You can gain knowledge of your condition and support from peers who understand all the obstacles you are facing. Find support groups, join Facebook groups, search hashtags and message others. Find peers going through what you are. You will learn there�s a unique �heart buddy� bond we all have to each other and that often, the best �medicine� is talking to someone who has walked in your shoes.