Sick All By Myself
It’s stressful being sick with a genetic disease that causes a wide range of chronic symptoms. It’s even harder being the only one in the family who was seriously sick. Being the only one with cystic fibrosis was a unique kind of isolation because I couldn’t keep up with my siblings and I couldn't do what they could do. I could try and try but, in reality, I could never be at their level of functioning.
Isolation with cystic fibrosis
I would watch my siblings play outside and do things that I wanted to, but it was impossible. I felt lonely at times. I felt angry as well, mainly because I longed to be playing catch and running to see who was the fastest and I couldn’t. I’d try, but I would never last. My lungs would give up on me, I would have an attack, and I would need to go home and nebulize. I remember having my dad pat my sides for percussion therapy while wishing that I was playing, wishing that I was a normal kid.
All the doctor visits, painful procedures, and tests I had to endure when I was young were rough. I knew other kids weren’t doing what I was doing. I knew my siblings were doing something cool while I was in the hospital.
CF made me different, it made my childhood different. I never had my own room because I needed to be watched all the time. I would stop breathing in my sleep or have breathing attacks in the middle of the night, so someone always had to be there to help me. I’ve never slept by myself--and that is my normal.
I thank my brother for being that person who was my constant companion. He’s my best friend and I cherish him dearly for doing what he did for me without complaints. Now my husband watches me, and I treasure him for loving me fully and unquestionably.
While my childhood was tough because of CF, it helped mold me into a strong person. It helped me appreciate my family so much for all their sacrifices. While I thought I was sick by myself, and I thought I suffered by myself, I really wasn't by myself at all.
My family has always been there
Without me realizing (because I didn’t), my family had to watch their daughter and their sister go through so much suffering, pain, and isolation that no child should go through, all because of my cystic fibrosis. They’ve been told that I was going to die and that they needed to prepare for my death. They had to deal with the uncertainty of when I might die. They were helpless.
They did the best they could to make sure that I was happy. While I knew I was different, they made sure I knew that they always had my back. I couldn’t ask for a better support system.
I thank my dad for everything he’s ever done for me and for all his sacrifices just to make sure I was healthy. Even when he was scared of losing his daughter, he always took my fear away. He makes me laugh and I know everything will be okay. It still eases my heart. While I thought I was in isolation with my cystic fibrosis, I wasn’t. I always had them--my family.
Do you feel lonely living (or caring for a loved one) with cystic fibrosis?
Have you experienced similar feelings? Tell us about your experience in the comments below, or share your story with the community.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?