Growing Up With a Sibling With CF: My Sister's Perspective
I am very lucky to have grown up in a family that loved me for me--and my CF. Being the only one in both my immediate and extended families with CF, my experience has always felt uniquely different. Until that is, I remember my siblings lived this journey with cystic fibrosis alongside me.
A little about our family
Our dynamic in the Jaggers’ Family has always been special as we were raised by a single mom. My dad passed away when I was 6 from pancreatic cancer. (My sister was 9 and my brother was 14 when our dad passed away.) Therefore, a lot of our childhood consisted of the three of us and my mom, of course.
As far as I can remember back, my sister and I have always been best friends. When we weren’t playmates, she acted as a second parent to me. Always taking care of me, protecting me, paying for food, picking up my medications, and telling me when I was acting ridiculous. I know my sister is special. She is eternally good, understanding, and funny as heck. From my perspective, her relationship made growing up with CF easier--something I will never forget. In this interview, she gives her perspective on growing up with a sibling with cystic fibrosis.
Interview with my sister
What was it like growing up with a sibling with cystic fibrosis?
Sib: I think I was 8ish when you were officially diagnosed. Those elementary school years didn’t feel extremely different. As we got older, I felt more protective of you, but yet wanted you to do all the things your heart desired--I still feel that way to this day. When something is a part of your life or growing up near it--yet not having it be your own experience--it does not feel that out of the ordinary. It was just how it was.
Was it difficult having a CF sibling?
Sib: The short answer is-- yes, but not because it made my life harder. It was more because of changes in our family dynamics and seeing my sister in pain that made it hard. From the mid-90s until now, it felt like CF was in this gray area of achieving more quality of life yet always being cautious with those dreams. That was hard to watch. But, I feel it was beneficial for me to see that in you and see how you always pushed.
What was enjoyable or a benefit to having a CF sibling?
Sib: All the delicious snack foods you ate to gain weight and partaking in all your food obsessions-- both good and bad, sharing my experiences and your experience living with it to those around us, and learning about the complex medical care and the barriers and struggles with that. It opened my eyes a lot.
Did you ever feel like your CF sibling got more attention from our parents? How did that make you feel?
Sib: I do think you got more attention but it was a necessity. Early, early on when we were young, I could say I felt a sibling jealousy but that quickly left me and was replaced with love and a loyalty to help. That sounds rehearsed and like the “right answer”, but it truly has helped set the foundations of my views on life and is a pillar in my strong relationship with you.
What advice would you give to parents where one sibling has cystic fibrosis and the others do not?
Sibs: My advice would be to involve them in the care someway so they understand how they can support their sibling. Explaining treatments, all the medications, and daily care helped me to understand all the time and effort spent keeping you healthy. I think understanding and being aware of how chronic illness affects all aspects of your life has provided me with insight and gave me structure to feel when things might have felt weighted differently at times in our family.
Also, many of our rules and expectations were the same. However, there were times when things looked a little different for you and that was okay.
Has CF made a lasting impact on you?
Yes- absolutely. We have recently reflected as a family on the changes the modulator medications have made in your life. I would think my entire childhood and into early adulthood about what a “cure” would look like and I couldn't picture it. I would tell people about your story or they would share with me about you and how much my sister has been through.
Although there are many factors to it all and so much I don’t understand, I know I can see changes in you now. These are the changes we have hoped for for 25 years! They are here! What an impact that has made on me as your sister to see you get better.
(P.S. I love my sister!)
Did you grow up with a sibling with cystic fibrosis? Please share your experience below!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?