In January, we asked you to tell us what issues you felt had the biggest impact on your life. You told us these were treatment, physiotherapy and exercise, CF being an invisible illness and emotional wellbeing. Working with members of the community, we used your responses to develop the theme for CF Week, and we’re excited to announce this year we will be exploring:
For many people with CF and their families – now more so than ever – life is a constant balancing act between the demands of CF and aspiring to live a life unlimited. This year’s CF Week is all about you: we want to celebrate the resilience and strength of our community and share your experiences, good and bad, of how you balance CF with your everyday life. We will end the week with our annual Wear Yellow Day, only this year we are taking a different approach, inviting everyone to a virtual ‘Big Yellow Party’ to raise funds for our Emergency Appeal.
Share your story
Sharing your story
Over the course of this year’s CF Week, taking place from 15 – 21 June, we will be sharing your stories of the challenges of everyday life with CF and how you balance them. Whether you have a story about juggling your child’s treatment with home-schooling, an amazing life hack for fitting in your physiotherapy around work and your social life, experience of after your mental well-being while shielding due to COVID-19, or balancing living with an invisible illness, we want to hear from you.
To share your story for CF Week, simply get in touch with us at firstname.lastname@example.org and tell us:
- a little bit about you and your CF, or about the person with CF you care for;
- what balance means to you;
- if you have one, a ‘life hack’ or a way you cope with the challenges of life with CF; and
- any pictures of videos of you and your life hack.
Closing date for submissions is Sunday 31 May.
If your story gets chosen to feature for CF Week, a member of our team will be in touch to find out more. We might ask you to write a blog or record a vlog or video, both of which we would support you with. If you have a preference or any particular story-telling skills, please include this in your initial email.
We may not be able to feature all of the stories; however, if your story does not get chosen for CF Week we may revisit it for future campaigns and, with your permission, can hold onto your story until something suitable arises . You will also have the opportunity to share your story on your social media using the hashtag #BalancingCF, which we will also look to share.
If you need immediate support or information on any aspect of CF, please contact our Helpline.
The issues you chose
Below are the top three issues you chose to talk about during this year’s CF Week. However, these are just some of the issues and we will continue to raise awareness about CF in all the ways it can impact individuals and families.
Treatment, physiotherapy and exercise
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.
CF as an invisible illness
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.