I Am Not My Illness and Neither Are You

As someone who live with a chronic and terminal illness, this is a motto I have tried to live by and encourage others to try to do the same. Yes I have Tetralogy of Fallot, Pulmonary Atresia and Pulmonary Arterial Hypertension. But that is not who I am. I am Becca, a 21 year old college student who loves to collect snowmen stuffed animals, listen to music from the 50’s and 60’s, likes to read and loves Broadway musicals.

 My records say that I am 21 year old female born with Tetralogy of Fallot, Pulmonary Atresia and Pulmonary Hypertension. It says that I take 45 pills a day, get a blood draw once a month and have to sleep with oxygen at night and when going above 3,000 feet.  It says that I have had 4 open heart surgeries and over 20 heart catherizations. 

But I want to tell you what these records don’t tell you about me:

I collect snowman because I’ve had a special stuffed animal named Frosty that has been with me through every procedure since pre-school.

I perform American Sign Language to music in a choir called Arizona Friends in Sign
When you read my records, it doesn’t mention that I go to elementary and middle schools giving anti-bullying speeches because I myself was bullied as a kid and teen because of my illness.

My favorite book for the longest time was Nancy Drew. But then I grew up and I love any type of mystery novels. Reading from a young age then went on to create a love for writing which has now taken form in me having my own blog about what it is like to live with a CHD and PH.

If you only asked me about my illness, you’d never learn that I love musicals, reality television and comedies. It doesn’t tell you that my favorite TV shows are The Office, Supernatural and Survivor. My favorite movies are Grease, That Thing You Do, The Proposal and Radio.

You wouldn’t have a clue based off of my records that I love swimming and traveling during the summer, or that I love getting Wild Mountain Black Berry ice cream from Tillamook Cheese Factory in Oregon.

My favorite thing to eat besides junk food (like any regular college kid!) is steak and mashed potatoes. But my records don’t mention that either.

My records also don’t mention that I am studying psychology and counseling , with plans of being a counselor for kids with chronic or terminal illness when I graduate.

So to any of you out there who have an illness and you feel like it is defining  you and your life – you have the choice of letting it do that or not. And to those of you who know or love someone with an illness – remember that we are human. We are more than our diagnosis. We have hobbies, dreams, goals, likes and dislikes.

I am not my illness and neither are you.
Hope and Love,


  1. Your records probably don't say that you are an amazing friend. You are. Or that you are an inspiration to so so many. You are that, too. You are beautiful. You are kind. And you are one of my favorite people!! All the Shraders love you, Becca!!

  2. Precious Becca, I want you to know that you have been on my heart and that I have been praying for you daily. I am a friend of Claire's and her love for you makes me love you also! You have a beautiful heart, and I loved this post. You will go far, lovely!

  3. Becca..I am a friend of Claire Shrader. Your blog is beautiful and this entry echos my heart. I always tell people, "I bipolar..but please don't say I am bipolar. It is not my middle name." My records don't show that I love to travel, too! And they don't show that pandas are my favorite animal. They don't tell you that I love music, that I sing, or the Wicked is my favorite musical and book. They don't say that I am an author or that I adore children. And they especially will not tell you that my Jesus is my world. Thanks to that last factor, my illness does not..and never will..define me. Thank you for posting this. I am praying for you. Remember that you can do all things through Christ Who gives You strength and also that God has a hope and a future for you. Cling to that, Rebecca. Cling to that..and as Jack says in Titanic..never let go. Infinite X's and O's..Savannah


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My Life As A Chronically
Ill Young Adult
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