Dialog Box

Children's Tumour Foundation of Australia

Understanding leads to compassion

There are just some things you can't learn in a book

 Over the space of 10 weeks, myself and two fellow Master of Genetic Counselling students had the amazing opportunity to be part of the Children's Tumour Foundation (CTF) team to help develop new educational resources for teachers and parents.

We had the pleasure of meeting some of the CTF staff, NF community and NF healthcare specialists (virtually, of course) and I learnt something from each and every interaction. But one thing in particular stood out to me, it was a quote from one of the parent interviews when she said, "understanding leads to compassion".

This quote really reflects the key themes of all of our interactions during this placement - that awareness and understanding of NF in the wider community would benefit all. But to spread understanding, we need to both speak up and listen to others.

As future genetic counsellors, we spend years learning about genetics' underlying conditions. We learn about signs and symptoms associated with them; we learn about how these conditions affect health and life; and we also learn counselling skills. We learn, hopefully, sensitive ways of delivering information and how to assist with decision making. We learn how to empower our patients, but what we cannot learn in the classroom, is a deep understanding of what it is like to live with a genetic condition every day.

Through this placement, I’ve had the opportunity to listen to lived experiences; to hear about the positives and negatives of everyday life with NF and to observe the strengths and challenges that individuals with NF face.  I’ve learnt that understanding comes from listening, not just from researching and knowing the facts. Listening to lived experiences and learning from those who have the condition is key, as they are the experts.

We can learn all the statistics, the genetics and we can commit the diagnostic criteria to memory, but we can only truly understand when we listen to lived experiences - when we listen to the experts.

This insight into the lived experience is what ultimately leads to compassion.

I’m so grateful that the CTF community who have been so generous and shared their lived experiences with me, so that I can better understand and have true compassion for their situation. It is something I will take with me on my professional journey and also something I will endeavour to practice in my everyday life. 

To listen. To hear other’s stories. To make an effort to understand. Because the world could use more compassion.

Blog post written by Laura Barth, Genetic Counselling student at University of Melbourne

13 November 2020
Category: News
Tags: genetics, Neurofibromatosis, NF,