We asked people with CF which of the issues below they felt had the biggest impact on their lives, and the results are in! Most impactful was treatment, physiotherapy and exercise at 55%, followed by CF being an invisible illness at 49%. Shortly after that, emotional well-being was said to have a considerable impact and took 45% of the vote. Scroll down to look at the other issues that people with CF feel impact their lives, and keep an eye out over the next few months as we use your feedback to develop CF Week 2020.
Diet and weight
Many people with cystic fibrosis have problems absorbing nutrients, and need to take Creon and eat more than people without the condition to stay at a healthy weight. On the other hand, some people with CF will experience being overweight and trying to reduce their calorie intake.
From handfuls of pills to hours of physiotherapy and making sure you get enough exercise, the burden of treatment for people with CF can be immense. Many people tell us that sticking to their treatment regime can be difficult, with the guilt that comes from not “adhering” to treatment leading to shame and isolation.
Like any life-limiting condition, living with the ups and downs of CF can take its toll on your mental health. Conversely, some people with CF find that the condition has given them a greater understanding of what’s really important in life and helps them to stay grounded.
Having an invisible illness like CF can make it easier to decide when and when not to tell people about your condition. But it can also have a number of downsides, like being criticised for using disabled parking to having people not give up their seat for you on the bus.
Cross-infection and infections
Older people with CF may remember a time before cross-infection, while for others these strict rules are a normal part of living with cystic fibrosis. Whatever your experience, not interacting with others who understand what you’re going through can be isolating, and the fear of contracting dangerous infections can be a big concern.
Missing out on life
School, exams, parties, university, travel… these are just some of the things that CF can get in the way of, and while doing everything you can to stay well is important, missing out on important events can be frustrating.
Your career and CF
In 2018, more than half of people with CF over 16 were in work or study. Despite these exciting figures, many people with CF are too unwell to do so, and for many who are in work or education, it can be a huge challenge to juggle these demands with their heavy treatment burden.
Relationships and starting a family
When should you tell your friends or partner that you have cystic fibrosis? How should the people close to you help to support you with your condition? What issues come up when you decide you want to start a family? These are just some of the questions that might arise in your relationships when you have cystic fibrosis.