May marks Cystic Fibrosis Awareness Month; a time to reflect on the challenges my illness presents in my life- constant pain, endless therapy and medication. I usually have regular hospital appointments and admissions however COVID-19 has placed these on hold. My condition fluctuates greatly; some days I have energy and can go to concerts, meet my friends and family and do full days of work. Other days, I’m in agony with pancreatitis and chest pain, left exhausted in bed all day. The inconsistent nature of my CF makes it hard for me to plan anything. I rely on those around me daily, as I find it hard to complete simple daily tasks alone.
CF places great burdens on my physical and mental health. It prevents me from living as normally as those around me. I miss out on events, fall behind with school or work, fear getting ill, and that any second, I may pick up an infection and end up in hospital. Despite all the challenges it brings me, having CF has taught me a lot. It would be unfair to say that CF hasn’t helped me in some ways or that having it hasn’t had at least a few positives.
That is what I want to focus on this awareness month. CF has taught me how to cope with my own pain and illness in a positive way. I am grateful for the times when I feel well and do not take that for granted. It has taught me to make the most of days when I don’t wake up feeling less tired than when I went to bed. It has allowed me to appreciate time with friends and family more as I often miss out on this when sick. I try to make times spent with loved ones as special as possible.
Having CF has also taught me to be more compassionate to others. I’m well aware that there are loads of people who struggle and suffer far greater than I do, and I try to make sure I use my voice and privilege to help them. I am so lucky to have a home, access to food and water, free health care which I can access at any time. I am privileged to have a close family and my friends who all support and help me. When I look at what I have around me, I’m so aware of how much I have, despite my illness. This perspective can be hard to remember all the time, especially when things get hard, but it is very important to ground ourselves by taking gratitude in what we have.
CF has also allowed me to make some amazing friends within the CF community. Despite not being able to meet due to risks of cross infection (not that it makes much of a difference currently, with us all being kept apart), we are able to make such powerful and deep connections due to sharing similar experiences. Chatting regularly through skype and messenger to help and support each other has been such a great benefit for me for years. It has improved my mental well-being especially when I’m having a stint in the hospital and can feel isolated, others with CF can empathize with what I’m going through. I have also gone to my CF friends when asking about new treatments or to see if they can offer any advice of how to manage aspects of my CF, such as, exercise routines or what helps them manage pain.
I also have a greater appreciation for health care staff. I see how harsh their jobs can be and how and tirelessly they work to take care of all of us. It is thanks to them that my health is where it is at today. I think of my CF team as my second family – all of us with CF feel that way. We have such close contact with the team due to regular visits which, allows us to develop closer relationships with them. This makes being admitted immensely better. I know we are lucky to have this.
As hard as it is to live with this chronic life-threatening illness, CF has made me who I am, and it has helped me significantly.