Valuing voices of young living with rare diseases

I was diagnosed with cystic fibrosis (CF) when I was eight weeks old. The heel prick test that every baby in Australia undergoes at birth, came back inconclusive. After a confirmed sweat test, the diagnosis was delivered to my parents: I had CF. At the time, my mother was working as a nurse and knew the prognosis of this disease came with major life challenges. Later challenges included having a liver transplant at the age of 12 and going on to be diagnosed with Type 1 diabetes. To say that I am a complex medical case is an understatement.

Growing up with CF is really hard. You spend large quantities of your life in hospital, missing out on those crucial defining moments of your formative years. When I was in seventh grade, I lost almost six months of schooling due to my failing liver and then consequently my liver transplant that same year. Over time, the lines of reality blur and somehow, your entire existence becomes hospital beds, medications and doctors’ visits. You’re not praised for winning awards, or high grades – rather you’re rewarded for just waking up and living another day. This outlook has gone on to define my teen years and early adulthood, and hindered my ability to view my self-worth outside the context of my illness.

For far too long, young people have gone unheard by the adults in the room.

Through my experience with CF, I have had to learn how to become my own advocate. I have had to demand, push back, and be direct, just to get people to listen to what I want for my own body. I think it is hard for people to comprehend that a 10-year-old girl might understand what body autonomy means, and that her voice should be the final say. For far too long, young people have gone unheard by the adults in the room. Don’t get me wrong: young people listen and learn from each other, but it is hard to break down that wall and express your experience when none of our leaders are listening.

To me, advocacy means that everyone gets a seat at the decision-making table, that every voice is important and valued. When I joined Rare Voices Australia (RVA) as their Social Media Officer, I took this as an opportunity to raise the profile of young people living with rare diseases and the complex challenges they faced. From transitioning to the adult health system, to not being able to afford medication and health insurance without support, to understanding your rights at work as a person with a disability, to reshaping how we prioritise mental health in Australia.   

One of the biggest challenges facing young people is the transition from paediatrics to the adult healthcare system – courses should be taught on how to successfully navigate this! Paediatric care is patient-focused. Complex medical cases such as mine are discussed across all the various medical teams. However, when you walk through the doors to the adult hospital, it’s like a battle royale. Health professionals do not communicate with each other and you’re expected to navigate this new terrain with no assistance. It is important to remember how people can feel isolated when leaving behind everything that is familiar and safe. Hospital clinics should create transition pathways that open up dialogue between the two healthcare systems, ensuring that young adults continue to feel supported throughout their care.

Yet healthcare professionals still believed that my physical health should take precedence over my mental wellbeing.

Mental health education needs to be a higher priority. Young people in Australia have the highest prevalence of mental illness, yet education and assistance programs are still not at the forefront of healthcare. The stigma attached to mental health still lingers on from past generations, it is now completely up to young people to lead this shifting conversation and to be ambassadors for change. With all the pressure, stress and isolation associated with my complex medical history, it was important for me and my support network to understand that my mental health was just as important as my physical health. Yet healthcare professionals still believed that my physical health should take precedence over my mental wellbeing. Access to educational resources is also essential with my support networks, as this will help them to be better equipped in supporting me through my journey.

RVA understands that young people are important and is increasing their prioritisation of young voices to be included in the future health planning of Australia, especially within the rare disease space. At RVA’s upcoming National Rare Disease Summit in November, there will be a dedicated panel and workshop designed to reach out to young people living with rare diseases and to highlight what they have to say. As RVA’s Social Media Officer, I am often the first line of communication for RVA. It is an invaluable tool that allows RVA to reach people far and wide – from people who live with conditions so rare that there might only be a handful of cases in Australia, to millennials who grew up communicating through these platforms. As our technology develops so do health outcomes for young people, who need to be able to access the best coordinated care and treatments in a more dynamic way. As young people evolve, we need healthcare to adapt with us, to the changing prospective of an inclusive future.

Photo by John-Mark Smith on Unsplash