1. Do you have a primary diagnosis, if so, what is it?
A: I was born with Tricuspid Valve Atresia
2. How long did it take you to get diagnosed?
A: I was diagnosed right after I was born, as my skin was very blue and doctors could clearly see that something was wrong.
3. How did you feel when you were first diagnosed? (ex: relieved, upset, numb?) What was the first thing you did?
A: Since I was only a little baby, I can’t remember, but I know that my parents were shocked and obviously very worried. Lots of tests were done and I had a palliative surgery only a few weeks old, and a Fontan procedure at 4 years old.
4. What advice would you give to someone who is chronically ill but undiagnosed?
A: In my mind it’s always very important to listen to your body. Don’t push too hard if you notice your body is struggling. Your health is the most valuable thing, which is why it’s so crucial to pay attention to what you eat, exercise regularly and most of all spend time with your loved ones.
5. Has your chronic illness changed your perspective, and if so, how?
A: My heart condition made me so much more aware of time. I constantly want to make the most of my time, and am always concerned that I live my life to the fullest. Having a heart condition made me appreciate my family and friends even more, and taught me that it’s ok to accept help.
6. What moment are you most proud of in your chronic illness journey thus far?
A: During cardiac rehab in 2015 I signed up for a 5K run 6 months from then. I had never done any running before, but trained carefully and consistently to take part in this 5K run, only 6 months after open heart surgery. It felt great to cross the finish line!
7. What was your hardest (or lowest) moment, mentally and/or physically, that you’ve been through on your journey
A: In 2015 I had to have an open heart surgery to maintain my heart. We all knew that it would be a very difficult procedure and that recovery would take very long. But seeing the fear and worry in the faces of my parents and boyfriend when I woke up after the surgery, was heart breaking.
I was in heavy pain physically but knowing I have caused such worry to them was even harder to bear.
8. What or who has helped you the most during the lowest days?
A: My family, boyfriend and friends were the best support I could have ever asked for. I must have been an emotional mess after my surgeries but no one ever complaint about anything.
9. If you had any words of advice for someone struggling with a similar diagnosis, what would they be?
A: Stay optimistic, it will get better eventually! Also, talk to people about how you feel or what you are struggling with, chances are that others share your problems and are more than happy to talk about it.
10. What would you like the world to know about life as a chronic illness patient?
A: A chronic illness is part of you, but you are not your chronic illness. The condition might limit you in some ways, but that doesn’t mean that you can’t find a way to achieve your dreams.
All I ever wanted growing up, was to be treated like everyone else and not stand out for once.