Patients and Caregivers: Coping with Cystic Fibrosis
Reviewed by: HU Medical Review Board | Last reviewed: September 2019 | Last updated: February 2020
People with cystic fibrosis (CF) are living longer and are healthier than ever, but that good news also means more years of coping with sometimes difficult issues. People with CF frequently deal with the inconveniences, interruptions, and financial impact of treatments (called treatment burden); denial and non-adherence; and end-of-life issues. There is no cure for CF at this time, but many healthy ways of coping exist for people with CF and their caregivers.1
Finding the support you need
CF can be isolating, scary, and emotionally draining, but you don’t have to handle things alone. Talk to someone if you need help, whether that is a therapist, family member, or friend. Discussing topics other than CF gives you a sense of normalcy while talking about CF can help you better understand how you’re feeling.
Connecting with other CF patients can be invaluable for gathering tips and practical support to help you cope with the many aspects of life impacted by CF. There are 30,000 other people in the U.S. living with cystic fibrosis who know exactly what you are experiencing. Don’t be shy about joining online communities. However, people with CF should be careful about meeting other people with CF in person and remain conscientious about following the 6-feet-apart rule.1,2
Apps and services that can provide help
Family and friends often live far apart in today’s world, so long-distance caregiving is a reality. A variety of apps and services are available to help people with CF and their loved ones get help with everything from transportation to laundry.
Medication regimens for CF are often complicated. If you’re worried about remembering to take your drugs properly, the MediSafe app can help. It lists all the medications you take and sends you personalized reminders when it’s time to take the next dose. It also sends caregivers real-time missed medication alerts.
LotsaHelpingHands.com and CaringVillage.com
LotsaHelpingHands.com and CaringVillage.com can help you coordinate and communicate with local helpers and the treatment team. These apps allow you to group message others to ask for help with transportation, meal delivery, errands, and companionship and lets them provide feedback on how your person is doing. CaringVillage also lets you store important documents and medication lists.
Automated pill dispenser
If your person needs help with a complex medication regimen, an automated pill dispenser may provide the answer. These dispensers can be loaded with medications weekly or monthly and programmed to open and dispense drugs at a set day and time. Costs start at about $70.1-3
Learn about cystic fibrosis
The more informed you are about cystic fibrosis, the more in control you will feel. Ask your CF care team for reliable sources of online information, explore treatment options with your doctor, and consider participating in a clinical trial. Talk to pharmaceutical representatives about medications. Attend the CF Foundation’s annual North American CF Conference or listen to its presentations about CF research on YouTube.1,2
Coping for caregivers
Caregiving can be stressful, but you don’t have to do it alone. When your loved one has cystic fibrosis, you, the caregiver, need help too. The type of help and how often help is needed can vary dramatically from person to person, but extra support for the caregiver is a must.3
Friends, family, and the CF treatment team may be able to provide emotional support and help coordinating care, transportation, and legal and financial issues. Another resource, the Family Caregiver Alliance hosts a state-by-state database to help caregivers locate public, nonprofit, and private programs and services in all 50 states.3