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We won't stop caring for your wellbeing
Growing up with CF
I remember myself as an anxious child at school, especially with anything hospital related. I always worried that there would be something wrong with me (CF related), and that each time I went to clinic, I wouldn’t be able to go home and that I would be admitted. I was also terrified of long lines and bloods!
As I was often unwell, I feel like I learned at a very young age not to take anything for granted, to enjoy life at all times when I was feeling good, and to make the most out of everything. It may sound strange, but I believe that I am the person I am because of the lessons that having CF has taught me, and I am thankful for that.
I just try to always keep going, which is something that my parents taught me from a young age: to not give in to my condition. I keep busy and keep focused with a good routine, which is very important. I also have to tell myself sometimes that, if I’m having a bad day, that’s also okay. I need to allow myself to rest or to feel those feelings, but to always get back up and try again. It’s all about the balance.
I am often told that I’m ‘brave’, which is lovely, but I don’t feel that I am. I think that I am resilient, and that we all have this ability if faced with a similar situation. As humans, we have a great ability to adapt. Living with CF is normal for me. It is not that scary (well, most of the time!). I was diagnosed at six weeks old, so it is and always has been my life and is nothing new. I have never known any different.
Cystic fibrosis doesn’t define me
I learned very quickly growing up with CF how short life could be, and to try to let go of what I couldn’t control or change; worrying wasn’t going to change anything, it was just going to make me ill. I think having CF has definitely made me strong minded, determined and very empathetic. What I’ve been through really helps me strive to always do my best at my job. It takes a lot now to get me down. I never have, and will never, let CF stop me from doing anything or pursuing my dreams.
I don’t think too many people that I have met through work know that I have CF, unless they know me well. I never offer the information up, because I don’t want anyone to feel sorry for me or to look at me differently. I am happy to discuss it if it comes up, but as I always said – “I have CF, but it doesn’t have me.” There is so much more to me than having cystic fibrosis. It is a very small part of the person that I am.
Cystic fibrosis and wellbeing
I became a lot more aware of my own wellbeing when I trained in psychology. It helped me to make sense and understand how I felt, which was mind blowing for me. I loved psychology instantly as I was not only able to help others, but also help myself. I learned that I had to put the work in to manage my wellbeing, so that I could help others to my best ability.
I think when you have a physical health condition like CF, you are always focused on your physical health and staying well. However, it’s important to remember that your mental health is just as important as your physical health, and they both relate and impact each other. You have to put the work in to maintain your wellbeing too.
Don’t wait until things get really bad. It’s a good idea to work on your mental health every day, as you would with your physical health.
Here’s some simple ideas that might really help:
- Keep a journal of how you feel and monitor it to find your triggers (what makes you upset)
- Log your thoughts and challenge them – make a list of the evidence for and against the thought and review.
- Check in on yourself often and ask yourself how you’re doing.
- Keep a good daily routine – get some fresh air or go for a walk.
- Practice self-care – do whatever makes you feel good.
- Talk to someone you trust, like your family and your friends.
- Allow yourself to feel your feelings.
- Most importantly, if you need help in any way, ask for it. Talking with a professional can help you get things off your chest, but also teaches you healthy ways of coping and techniques to manage your own mental health.
When to just let go
In a difficult situation I ask myself: is there anything I can do to fix it or to make myself feel better? If the answer is yes, great! I can be proactive and do something about it. If the answer is no, I have to try and let go of control of the situation.
Whether I worry or not, I can’t control my health, I can’t control other people’s words and actions, and I can’t control the future. No matter how relaxed or stressed out I am, the outcome will be the same. So why torture myself and make myself upset and ill, when worrying will not change anything?
Worrying doesn’t make anything good happen, it just steals our joy. I might as well put my time in to better things, like self-care, doing things I enjoy, or helping other people.
Never feel guilty for saying no, for taking time out for yourself, or putting yourself first when you need to. Remember that you have to take care of yourself before you can take care of anyone else. You are doing your best, and that is always enough.
After a year which has affected the CF community so deeply, we want you to know that we remain totally committed to improving the lives of everyone with CF – that's why the theme of this year's CF Week is all about how we won't stop. Help us continue our work by getting involved in with CF Week or making a donation to support people affected by cystic fibrosis.
Wellbeing is important. The Cystic Fibrosis Trust's confidential Helpline provides a listening ear as well as practical advice, information and support. You can contact the helpline on 0300 373 1000 or email [email protected]. You can also speak to your CF team if you have concerns or questions about your own wellbeing.