05/30/2025
For CF awareness month, instead of only facts, i decided to ask Lilly to write out what life is like living with CF. Her response is long but I encourage you to read it ALL…it’s hard to comprehend the life she actually deals with everyday. 😢 This is what she had to say…
“The best way to describe Cystic Fibrosis is it’s always 1 step forward and 3 steps back. Living with CF is a challenging thing to deal with and most people from the outside can’t see what goes on in the inside. That has been a big thing in my life because I try to hide any problems that I struggle with. (Example: loss in lung function, weight gain, weight loss, depression, anxiety, body dysmorphia, chronic pain, blood sugar issues, infections, GI issues, etc). I have people every single day ask me “what is it like living with CF” and so I tell them but I also make sure I tell them each day is different …like one morning I may wake up okay and the next day I wake up feeling sick or just in chronic pain. Something I deal with almost everyday is having chronic pain when I wake up, but I don’t want that stopping me from living and enjoying my life. I may have a lung disease but I still like to do everything that any normal person can do….like sports! I did gymnastics for the longest time and that was some of the best times of my life! There was very much ups and downs. I always told my mom how hard it is to watch people go on and progress with the dream they have always wanted to do and me not being able to do that because I had constant set backs…like getting sick every couple of months or sometimes every couple of weeks which would cause 2-3 week hospital stays. Even if I felt bad, I would still get up and go to school for a full day and head straight to practice after school for 4 hours but those days that I was sick or not feeling well I would have to sit out on each event for 30-45 minutes. Some of those days, I was so exhausted that I would lay on the side of the floor or on a mat and just take a nap and that would set me back a bunch, but I never wanted to show that to people because I just wanted them to see the laughing, smiley, bright side of me. The past couple of years I have really struggled with joint pains and that had a huge impact on my gymnastics career because one day I was almost hitting handstand on the bars (which was the biggest goal that I always had since I was a little girl) , to barely even being able to do a kip on the bar (which is a basic level skill). Eventually, skill after skill I was basically having to relearn because I was in so much pain, but that was the sport I loved so I didn’t want to just quit and give up especially because I have some of the sweetest and supporting friends on that team that I don’t think some people even realize. My teammates and coaches would come up to the hospital in Columbia and visit with me all day because they knew how much I hated being up there. They are what kept me going in that sport and I just can’t thank them enough for doing all of that!! After a few years of constant fighting to do the sport I love, I decided I was gonna quit gymnastics because it was to hard to keep up with because my joint pain just got so bad and some days I couldn’t even walk….like my dad even had to carry me some (that took a very bad tole on my mental health). So when that kept happening I thought it was time to retire gymnastics and try cheerleading! But of course I still kept in contact with all of my teammates and I still get to see them every Saturday because my gymnastics coach was kind enough to let me come in and tumble with them on Saturday’s because she knew how much I miss seeing all of them. Now SCHOOL☹️…If you know me you know how much a hate school. School has been always very challenging on my emotional and physical health. All they way through elementary and part of intermediate school I went all day at school and that was super hard because there were so many germs and so I was constantly getting sick and having to wear mask at school just to try to help some of the germs. School always made me so tired especially having 4 hour practices right after school and then coming home to do all my meds and breathing treatments and repeating that everyday. It got very tiring so at school I would go into the nurses office every couple of hours to take a nap which means I would miss what we were doing in class and that would cause me to be behind but I just couldn’t make it through a day without taking one. So then when I was in 6th grade I decided to go fully online for school, which also happens to be the same time Covid happened so that kinda worked out perfectly. I wanted to be able to get more rest and try to minimize the germs and focus on gymnastics more at the time. I noticed I really enjoyed being online because I wasn’t sick quite as often which helped my mental health a little bit. I did that for three years and then I decided I wanted to have the high school experience so I went back to school all day which was a very big jump from no classes at school to all classes at school. I loved the change of going back to school and getting to see all of my friends because I missed them. But high school is a lot harder classes and more work and so when I’m sick and have to get hospitalized or have 8am doctors appointments (which means I have to wake up at 4am to do all my meds and breathing treatments), it’s harder to catch up. I get far behind on my school work and that’s super hard because I’m trying to get caught up on all the school work I missed and trying to do today’s school work but I would have cheer after and after full day of school and cheer and I’m exhausted and just want to rest but I know I have to get my work done. There was a lot of that this last year of high school, which took a big tole on my mental health but I just tried to hide it and I would have people come up to me and say “why do you always miss so much” or “how come your so far behind” or “why are you grades so low” but they never saw what was behind the scene of why all of that was happening m….like being exhausted or sick or just anything. That was really hard for me because I was constantly trying to fake everything.
I always get asked to hangout with friends like all the time but I always have to say “no” or “another time” because I’m so exhausted or I never feel good and I don’t think some people realize unless you have Cystic Fibrosis how much energy it takes to go hang out with friends like it takes A LOT. I love hanging out with my friends that have been with me for many years because they don’t care if I go and take a nap at their house because they understand that I need that in order to have fun. But when I hangout with new friends it hard because I feel like I have to put on a show almost just to make sure it looks like I having fun…even when I am actually having a blast, they just don’t see or feel how exhausted I am on the inside.
That basically sums up what it’s like living with CF for me but also each person with CF is a different so everybody’s day to day life can look different and my life looks different each day too. I may feel good waking up and the next day I have chronic pain or a sickness. I always tell my mom I don’t think normal people realize just how well people with Cystic Fibrosis can hide how they are feeling….like with any physical or emotional things they struggle with.”
*she picked these pics…she’s in Florida with her friend & she LOVES sunsets! CF life continues on vacation but she’s enjoying the beach & her friends!
