Ten Ways to Support a Loved One With CF
Supporting someone you love with cystic fibrosis is a great way to show how much you care and value their experience living with a chronic illness. Support from friends and family can really be beneficial to our physical and mental health in various ways.
However, it’s never easy to know exactly how to help. You may worry you might say or do the wrong thing or have no clue even where to start. Whether you’re a parent, family member, friend, colleague or significant other, here are some tips to help guide your loving support.
Assist with the day-to-day
Make a meal
Food seems to be the love language of many people with CF--true in my case! Offer to make a meal for someone with CF or their family to help lessen the load. If you want to be especially thoughtful, provide a meal during times of health and stability as well, not just during sickness.
Offer childcare or pet care
For adults with CF and families with children with CF, especially during exacerbations or hospital stays, consider offering help with childcare or pet care. Often the stress of finding care for children, siblings, and pets is a barrier to prioritizing care. Stepping in to offer your assistance truly shows how much you care about our well-being!
Be mindful of spreading germs
Staying mindful of the transmission of germs in your daily life is one of the best ways to show your support--not just during cold and flu season, but every season! Try to think of it as every time you wash your hands, cover your sneeze or cough, get your flu vaccine, or stay home while you are sick, you are sending love to the CF community.
Help manage their care
I always feel most supported when a loved one offers to help manage my CF care. Whether it’s picking up prescriptions, sanitizing nebulizers, or setting out supplies, those small actions are really helpful in the grand scheme of care because it’s one less task to be completed. Lessening the mental load periodically often makes a big difference in mental health.
Consider gift cards
Gift cards are a great way to monetarily show your support for someone living with cystic fibrosis. Because gift cards offer the recipient flexibility on usage, they are perfect for times of CF exacerbations, hospital stays, or celebratory doctor appointments. Food establishments, Amazon, and self-care services such as massages are all excellent choices to show you care!
Support cystic fibrosis fundraising events
I feel like this one goes without saying: supporting fundraising events benefitting cystic fibrosis--whether with your time, money, or talents--truly makes a difference in your loved ones’ lives. Better treatments, medical care, and quality of life are the result in part from various fundraising events and your participation. So, thank you!
Moral support for loved ones with cystic fibrosis
Write an encouraging letter
Sometimes encouraging words are the perfect way to offer a little support to someone with cystic fibrosis who is struggling or needs to be reminded how great they are. Let them know you are proud of their dedication to taking care of themselves. It always helps to know there are people who are continually cheering you on when you lack motivation!
Plan a fun day out
A day of distraction from the stress of CF is always a fun way to help show your love. Plan a special day out that includes quality time that isn’t focused on their health--but them as people. Your day doesn’t have to be expensive at all. Pack snacks and visit the local book stores, parks, beaches, etc.
Listen and ask thoughtful questions
We all need a safe space where we feel we can talk about difficult things and feel heard. Because CF can be so isolating, sometimes it feels out of place to discuss CF life with healthy people. The best way to show you care about our experience is to listen intently and then follow up with thoughtful questions. Make it known you are there for us as a willing listening ear!
Pay attention to politics
Paying attention to what’s occurring in your local, state, and federal governments is a significant way to show your support to a loved one with cystic fibrosis (honestly, any chronic illness). Policies concerning health care and health insurance, as well as Social Security benefits and safety net programs widely affect those living with CF and their families. Be well-read to be well said, and don’t forget to vote!
How do you support loved ones with cystic fibrosis?
As they always say, “It’s the thought that counts” and I truly believe that's true. Hopefully, these ideas can add to the ways you can support a loved one living with CF.
What ways do you show your support for a person with CF in your life? Share with us!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?