Are Your Friends and Family Supportive of Your CF?
It is no secret that living with cystic fibrosis (CF) can be time-consuming, frustrating, or even flat-out difficult. Due to the day-to-day challenges of living with a chronic condition like CF, many of us rely on our family and friends to cope. To learn more about how others can support people living with or affected by cystic fibrosis, we asked our advocate team, "Are your friends and family supportive of your CF?" Here's what they had to say:
Response from Janeil Whitworth
"Absolutely! I mean, they don’t have much choice, as CF is all they know when it comes to me. My mom and family members on my mom’s side in particular have been very helpful during the hard times when I was on IVs a lot and declining as a new mom. They would offer to help with childcare and bring us meals every few days to take the load off me. My family is great, as they are constantly praying for me and encouraging me as well!"
Response from Kenny Boutot
"My immediate and extended family has always been incredibly supportive and protective of my CF for as long as I can remember. As I grew close to friends in high school, I opened up more about my CF and found that they were just as supportive, helping to organize and run fundraisers while promoting awareness and not treating me like a sick person. I have vivid memories of different vacations with friends and family where time would be allocated for me to use my vest and nebulizers, without cramping anyone’s schedule.
Even though it’s not much to give back, it’s extremely gratifying to speak to different friends and family today and tell them about my experience and improvements with Trikafta. With them being invested in helping to keep me healthy for so many years, I hope they can feel a bit proud for assisting me in making this far to enjoy the benefits of breakthroughs like that."
Response from Marieliz Landa
"Yes, my family and friends are incredibly supportive of my cystic fibrosis. My family has been my rock my entire life. My husband is my primary caregiver, and he is absolutely incredible. My brother, sister, and parents are truly incredible. I can say that I hit the jackpot because my family is wonderful and helps me with everything. My friends are amazing as well. If I need anything, they are always there for me too and everyone takes my health into consideration. They absolutely take time to ensure they are safe and healthy before they come see me or when we hang out."
Response from Emma Boniface
"I have often thought my family are “de-sensitised” to CF. Like it has always been the “norm,” so it feels less threatening to us as a family unit. At times, this makes it difficult to feel my family can comprehend what I am going through as a CF patient, just the same as I can never truly understand what they are facing being on the outside of my experiences.
Cystic fibrosis undoubtedly changes who we are, our values, and our reactions to trauma and stress. Hospital admission after hospital admission, procedure after procedure, difficult decision after difficult decision have left us in a state of angst and upheaval. Yet, time after time as a family we got back up and carried on.
I have seen first-hand that as much as my family members have been there for me over the years, sometimes they also need to take care of themselves. The emotional strain of living alongside chronic illness means they need to take a step back. I have spent lots of time exploring the links between chronic illness and the effects on parents or siblings – it is huge. Parents often suffer with some form of PTSD after their child has been diagnosed with a chronic illness such as CF.
Thankfully, when my family have needed a break, I have always had a sturdy support network of friends to fall back on. These wonderful humans have stood up to be counted on my good days, not so good days, and the worst days imaginable."
Response from Katelyn Harlow
"I have incredibly supportive friends and family! My family is small compared to some, and I have a small circle of close friends, just 2 or 3 girlfriends and their husbands. Nevertheless, we are tight group. I also get a lot of support from the online gaming community. Through that, we have met a lot of friends who are supportive, kind, and who try to understand my circumstances."
Response from Ella Balasa
"My family has been my greatest support throughout my life, namely my parents and brother. My mother understands me like no one else does. Each day she does many tasks and chores for me just because she wants to make my life easier. I can lean on her when I need help, and she is someone I share my deepest feelings with. When I was younger, my parents would take turns working half days while I was hospitalized just so one of them would be with me all the time. I was never alone. When I was told I needed a lung transplant, my brother immediately started researching live donors, as he wanted to donate part of his lung to me. Obviously, this isn’t performed anymore, but he learned so much about the lung transplant process through his research and was informing me about facts and statistics I had no idea about."
Response from Nicole Driscoll
"I am so fortunate to have unconditional love and support from my family and friends, especially living with my CF. I have always felt very supported by my loved ones even when I was a young girl. My parents would run fundraising events for CF, and our closest friends and family would be there, no hesitation. When I was young and had to stay in the hospital for a “tune-up,” I was always loved on and supported with cards, balloon and flower deliveries, and many visits that I felt so special. Believe it or not, I actually looked forward to these hospital stays.
As I grew older, CF became more complicated for me as I realized how it made me different and how it impacted my life choices. I started keeping it more to myself and only those closest to me know that I also had to manage this disease and all the emotions that came along with it. This made the support from those closest to me that much more meaningful and critical to my mental well-being. Support came in a number of different ways: talking, listening, hugging, distracting, and spending time together in my home when I was on home IVs or needed to stay away from crowds and germs.
As I became an adult, this support evolved into my loved ones offering to help do every day chores if I wasn’t feeling up to it or recognizing that I needed a break. For example, cooking or dropping off dinner or snacks, cleaning my home, or even taking my young children for the night or weekend. I often struggle with asking for help, but those closest to me know this and do not wait for me to ask – they insist, and I realize how amazing it is that they know me so well. This allows me to really focus on me, my health, and my mental well-being."
Response from Meagan Brackeen
"Our family and friends are a constant source of support and understanding when it comes to cystic fibrosis. From the moment we learned of Margo’s diagnosis, they have demonstrated unconditional love for our daughter and a desire to advocate on her behalf. For me, the simple act of asking questions and learning the many intricacies of CF and what it means for Margo and us as a family speaks volumes. I am constantly humbled by our family and friends’ support of our fight in finding a cure for CF."
Response from Holly Williams
"Our families have been very supportive of our daughter’s CF. They understand the severity of the disease and respect our boundaries when it comes to wearing masks, covering coughs, sanitizing hands, and keeping her away from hazardous places to her health, like ponds or other water sources. We have had a hard time with some people in our lives not taking CF seriously enough or just overall not educating themselves on it to where they understand why we have boundaries and treatments in place. Comments like 'all that medicine can't be good for her body... Have you considered a holistic approach?' is hard for us to hear. It makes us feel like you don’t think we want the best for our child or that medical intervention is not necessary."
Response from Kate Eveling
"I am lucky to have a close-knit family. I am so grateful to say that my family have always been a rock-solid support with my cystic fibrosis. There were times when I was younger when my brother, who doesn’t have CF, would help out with my physio on the old school ‘tipping bed.' My dad would often take me to clinic and tell me TERRIBLE dad jokes to make me laugh during blood tests. And mum was always there to help and support me when I was unwell. Even when I was in the hospital, they would come in with food and extra drinks or whisk me away to a nearby restaurant! One time when I was in pediatrics, my brother printed off the walkthroughs for a level from the popular PlayStation game ‘Tomb Raider’ (which we were both fanatics in!!) just so I could play the game while I was in the hospital and not get too bored. I am endlessly grateful for their support."
Have you (or a loved one) been experiencing any negative side effects from Trikafta?