Ask the Health Leaders: Family and Friend Support
Support from family and friends can be a game-changer when living with cystic fibrosis (CF). It can look different for each person, and change over time to fit the needs of both the supporters and the CFer.
We wanted to know about the most meaningful support our health leaders and caregivers have received in their journeys with CF. Their touching and personal answers help to shine a light on the impact your circle of family and friends can have:
Response from Ella
My family has been my greatest support throughout my life. My mother understands me like no one else does and daily she supports me by doing many tasks and chores for me to make my life easier, like picking up medications from the pharmacy and making high calorie protein shake snacks for me to maintain my weight and nutrition. When I was younger my parents supported me daily by doing manual chest PT on me even before the airway clearance vest was available. They would also take turns working half days while I was hospitalized just so one of them would be with me all the time. My friends support me through fundraising for the local CF Foundation chapter as young professional ambassadors and over the years have always been willing to help me physically by carrying my oxygen when I have been very sick and emotionally by calling, texting, and visiting me during extensive hospital stays.
Response from Katelyn
The support of family and friends is vital to both my physical health and my mental health. One of the many ways that has helped me feel support from those in my life is when they offer an “out”, especially when I was very ill. An example of this would be a friend and I making plans to see each other in a few days, but on the morning of they would text me, “Hey! How are you feeling today? Do I need to bring the tacos to you or am I stealing you away for lunch?!” Their effort in recognizing that I want to get out, but am not always able to because of the limitations, made me feel so seen. Another way your loved ones can support you is by asking how doctor appointments, scans, or tests went. When we share, our joy increases when you celebrate with us after a good appointment. In the same vein, when you help us shoulder the emotions after a disappointing or upsetting appointment, we feel seen, supported, and loved. Each person is so different so support will look different depending on your dynamics but having that support and love can really make a difference in our lives.
Response from Janeil
Supporting someone with CF can mean so many different things. For us, the biggest help from my family is when they make meals for our family when I am unwell or on IVs since I am the primary cook in our household. During my pregnancy and the newborn stage, we have been blessed with A LOT of meals that were so very helpful. The other ways friends and family support me is by offering to watch my children when I need a break, staying home when sick to keep us healthy, vaccinating against COVID and the flu, offering a listening ear when I am struggling with something, and inviting me to do fun activities as a mental “break” from CF. I am lucky that my family is very supportive or doing whatever they can do to help me stay healthy and live out my dreams.
Response from Kenny
This one is difficult to describe, because I feel that my friends and family have always been 100% supportive regarding my CF and my health. The more active of them have been involved with fundraising events like Great Strides, Fall Fashion Fling/Harvest of Hope, our annual garage sale, or even the occasional facebook donation. Those are all great ways to support awareness and finding a cure for CF.
What makes me feel the most supported, personally, is when those people in my life simply ask how I am doing or feeling. It acknowledges they are thinking of me without feeling like I’m being doted on or taking too much of their attention. Like I said, it’s difficult to describe, but I appreciate when my friends and family are there to support me emotionally, and that I can turn to them whenever I need someone to talk to. That’s my favorite kind of support.
Response from Nicole
It takes a village. Now I know that saying typically refers to raising children, but I believe it applies to life in general, especially when you are living with a chronic illness. CF can be wildly unpredictable and cause your life to turn upside down when you least expect it. If it weren't for my family and friends, I am not sure I would have been able to get through the tough times while remaining mentally stable.
The best thing friends and family can do to support me with CF is just simply being there for me. That can mean a lot of different things: it can mean listening to me when I have bad days and need to vent or listening to me when I have a great doctor appointment or being a shoulder to lean on when times get tough. It can also mean encouraging me to sign up for that half marathon with them and being my training partner to keep me accountable. It can mean taking my kids for the day when I'm exhausted and need a break, or just need some time to myself. It can also mean dropping off food or ordering takeout for me and my family on a whim to help alleviate all the tasks that sit on my shoulders as a person living with CF and raising a family. Simply letting me know that they are thinking of me when I'm going through a not-so-great time means so much more than they could ever think. Living with a chronic illness can be frightening and isolating, so having the love and support of my family and friends reminds me that I am not alone in the fight against CF.
Response from Meagan
The smallest acts are often the most appreciated when it comes to supporting Margo and our family. When someone asks how Margo’s clinic appointment was or texts to let me know they have a cough before we are due to see them, it shows a level of thoughtfulness that goes above and beyond. Obviously, when we fundraise for the CF Foundation, we are blown away by the generosity of family and friends, but usually it's the small considerations that mean the most.
PARENTS: Do you have a hard time finding snacks that your little CFer will eat?
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