Ask The Advocates: What Has Been The Biggest Obstacle You Have Overcome With CF?
Each person in the cystic fibrosis community has had to overcome their fair share of obstacles. These obstacles come and go throughout our lives but, together, we can overcome them! We asked our advocate team, "What has been the biggest obstacle you have overcome with CF?" Read on for their answers.
My biggest obstacle with cystic fibrosis
Attending graduate school
Response from Katelyn Harlow
Keeping my fear to myself so my son doesn't sense it. Trying to maintain the composure of someone who is strong. Advocating for him as much as I can. Trying to balance the life of a mother with the life of a mother of a child with CF. Working when I know that should be with him. These are all things that I battle really often. I constantly ask myself if I am doing enough.
Another obstacle is not worrying about the future. I am such a planner and so driven by my own anxiety that I am never content with "Whatever happens, happens and you can't worry about that". Not with my son. Not with CF. The first cough that I hear and my mind sends me into overdrive.
Weight, education, and motherhood
Response from Cheriz K
I’m not sure which is the biggest, all were big moments in my life that give me pride and happiness. One includes my weight. I had a stomach tube for 17+ years (ages 12-29), I was able to say goodbye to my stomach tube in 2014. My doctor had me prove I didn’t need it, by keeping it and not using it for 6 months. I had to keep on top of my calories, keep track of weight, and really push myself to eat (even if I was sick or not hungry). But, with the help of my husband (boyfriend at the time), I was able to keep my weight up without it. While I was thankful to say goodbye to it, I’m thankful for everything my g-tube did for me.
Another huge obstacle with cystic fibrosis was education. I had lots of major surgeries and illnesses during my college years. I had to take medical withdraws from many classes and full semesters. After 7.5 years of keeping at it, I graduated with my Bachelor’s degree from the University of Illinois.
My last and maybe greatest challenge was becoming a mom. I can’t have children biologically, and I was worried that adoption and surrogacy were too expensive. However, my husband and I fell in love with fostering once we really started doing it. We have been long term foster parents to 4 children in the last 2.5 years. We have also done short-term stays for 6 kids. We currently have one little boy (age 5) that has been living with us since he was 2. I’m thankful my CF encouraged our path to being foster parents.
Overcoming my fear of death
Response from Marieliz Landa
The biggest obstacle for me was accepting death. I had to come to terms with it being a constant threat over me. I didn’t want to be scared to die so much that I let that fear cripple my life and my ability to live it to the fullest. Once I accepted it and I wasn’t scared, I was able to live and do things I honestly would never have done if I let fear control my life.
Not comparing myself
Response from Janeil Whitworth
Personally, in adulthood, the hardest obstacle has been to stop comparing myself to peers my age without cystic fibrosis. I used to feel guilty or upset that I wasn’t able to use my college degree, start a career, be a physically dependable friend, have financial freedom, reach adult milestones without draining preparation, etc. Things that seemed relatively easy for people my age are often not easy for me. It took me a while to grieve and let go of the comparisons.
They say, “Comparison is the thief of joy.” Now, I know that my journey has been uniquely my own, and I am exactly where I need to be to make my family, my health, and my happiness a priority.
What has been your biggest obstacle with cystic fibrosis?
Each person's journey is different and very valuable to share. We would love to hear what obstacles you have overcome with cystic fibrosis. Share your thoughts with us in the comments below!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?