For Sam Lefoe, the transition from a paediatric hospital to an adult one was challenging. At first, he thought being an adult with CF meant taking on these challenges alone. But he soon learnt it didn’t have to be that way.
Transitioning from childhood to adulthood is a tale as old as time. Not only is it perhaps the only thing in which all of humanity can share it is also often one of the most defining periods of an individual’s life. Great stories often reflect on the “coming of age” theme where the hero is whisked away from the comforts of their childhood home and set on a path of growth and evolution into the adult they need to be in order to save the day.
Some of my favourite stories are centred on this idea, such as the all-time classics Star Wars and Harry Potter. Growing up I always imagined myself being whisked away by a wise old wizard to face great challenges and learn what it means to grow up. And in the end, I did face many challenges, more so than the average teenager would have to. But it wasn’t a wizard that sparked this journey, but an illness we all share. And as all of humankind can relate to the great transition from child to adult, I think all who live with CF like I do can relate to the challenges this burden inflicted on us during our individual coming of age adventure.
In this confusing time of growth all teenagers must balance the changes they’re experiencing physically, socially and mentally. All this alone is enough to send your mind spinning with confusion and creates many challenges to overcome. Those of us with CF have so much more to deal with on top of these “normal” challenges. Our path of growth is blocked by many difficult obstacles.
One situation stands out as it is not something many would expect. I didn’t foresee how much of a challenge it would be. Not only must we leave behind the comforts and protection offered by childhood, but we must also transition from a paediatric hospital to an adult facility. And let me be clear, this is not always an easy thing to do.
For me it was leaving the Royal Children’s Hospital in Melbourne. This hospital had seen me through the first 18 years of my life and all the ups and downs. In truth though it wasn’t the hospital itself, rather the people who cared for me. The nurses and doctors at the Royal Children’s never failed to make me feel safe and secure. Which is no easy task, especially during admissions. My first two-week admission when I was nine years old terrified me beyond belief. And let me say this much, the conditions of the ancient building the Children’s Hospital used to be did not help this dread. But, at no point in my childhood or during any admissions did I ever feel like my health was out of control as the medical team were there with me every step of the way.
This feeling of safety is so important for any child, and it mimics the safety given to you by your parents when growing up. Having not only your parents helping you in your quest to adulthood, but a caring team of doctors and nurses makes you truly feel like you are cared for. But you can’t stay a child forever.
Not only do we take your first steps into the unknowns of the real world at 18, but we must navigate the scary reality that our health and life is now in our own hands. We leave the comforts of childhood safety and step into a new world of responsibility. Leaving behind the shelter of a paediatric hospital is daunting at first, as the care and safety you felt as a child is replaced with uncertainty and anxiety at what the future holds.
This is the turning point in our individual quests where we must take on the responsibility of our condition and ensure we do everything we can to be the healthiest versions of ourselves. No longer will doctors and parents lead the way through the journey of CF as they did when we were children, now is the time to take charge and become the hero of our journey.
My transition story started earlier than most. When I was 16, I made the mistake of thinking I needed to take on this responsibility alone and began traveling solo to the clinics every three months. Much like protagonists in coming-of-age stories, I needed to make some mistakes in order to grow. The mistake I made was thinking that taking responsibility and isolating myself was the same thing.
Sure, at the time I believed I was doing the right thing by traveling four hours to the big city for all my appointments and medical procedures all by myself, but I also began concealing the information and results I was receiving from my family. This mindset came from a place of deep insecurity about myself and my condition, and I naively believed I could keep my family from worrying about me by isolating myself. This mindset led into my early adult life as I transitioned from the children’s hospital to an adult one, all while trying to take on the world alone.
It’s easy to get lost on your path to adulthood and even easier to hide who you are to those who love you the most. But through many trials and self-growth I began to understand that growing up and becoming an adult isn’t something you need to do alone. Taking on the world and your health doesn’t need to be a solo quest. Accepting who you are and trusting those around you to support you is the way you truly grow. Your transition does not need to be isolating and lonely. Face the challenge with the support of those who love you, whoever they are and learn what it means to be an adult with CF.
Sam Lefoe is 23 years old and currently living in Wollongong NSW, studying international studies at university. He was diagnosed with CF at birth and has learned to live with its challenges ever since. His passions are traveling the world, writing stories and exercising, whether that means trying to surf or finding other exciting outdoor activities. He is always looking for the next big adventure and loves trying all sorts of new things.
Read about Olivia’s experience of transitioning to adult care. Hear from Lucy Keatley, a Clinical Nurse Coordinator from Westmead Hospital, on her top tips for changing clinics. Learn more about dealing with change.
If you would like to share your story, please contact us at firstname.lastname@example.org. We’d love to hear from you and so would our readers.
This story was published in September, 2021.