I was born in Cape Town, South Africa in 1982 when not much was known about CF. In fact, the doctors told my parents I would probably not see my third birthday. Thirty-seven years and one double lung transplant later, I am still here feeling fitter and stronger than ever.
Growing up with CF, I always considered myself as ‘normal,’ despite the many challenges thrown my way. This mentality was ingrained in me by my loving parents and my grandmother Henny, a survivor of the Holocaust and its atrocities. My parents would push me to do my CF treatments; countless medications, nebulisers, physiotherapy sessions and hospitalisations for intravenous antibiotics. I also used weight training, martial arts, swimming and squash to build my body up and give myself the best chance possible at living a healthy lifestyle. It worked for me, and to this day, I am still involved with those same physical activities.
I will be the first to admit that I have struggled on and off with my own mental health demons in my life. In many ways, I have had to live a very regimented lifestyle from an early age. This worked to keep me physically fit but unfortunately, did not always allow me the time to process things psychologically. I had to work harder to achieve my goals for my education, career choices and everyday life issues thrown my way. I found this particularly hard during my primary and high school years. With age, a little wisdom and access to good care, I have been able to process things and acknowledge that I cannot control everything in life. I live by my own motto, ‘determination and dedication are the strengths of one’s soul’.
Over the many years in and out of hospital, I have noticed one major oversight in the way people with chronic disease are managed. Unfortunately, people are often labelled by their condition. I have had hospitalisations at times in my life where I had been coordinating a ward as a mental health nurse and managing a household with small children the week prior. Then suddenly, I was lying in a hospital bed being referred to as a ‘CF’ during nursing handover, just outside the door. There are many examples; ‘you guys tend to sleep in,’ ‘the other CF’s like eating that,’ ‘you all end up on oxygen,’ ‘poor things.’ Simple remarks without ill intent but powerful and potentially degrading to an individual. As a mental health nurse, I am very aware of the impact words may have on one’s self esteem. I passionately believe that more psychosocial training needs to be geared towards health professionals working with people with chronic disease.
I would like to personally thank Sue Morey (Nurse Practitioner), Anna Thai (Respiratory Consultant) and Jamie Wood (Physiotherapist) for all the years I have been treated as an individual, rather than a condition. I am truly grateful for all their help and support over the last 20 years. I would also like to thank the entire treating team at the Fiona Stanley Hospital Advanced Lung Disease Unit for the wonderful support and care I continue to receive. Seven months ago, my life changed forever as I continue my journey with new lungs. The work these people do is truly life changing.