Finding her voice

19 Aug 2021

Ambassador Q&A with Kiara Schonberger

Kiara Schonberger has been living with Crohn's disease for 7 years and her diagnosis didn't come as a shock due to her family history of Crohn's disease and other autoimmune diseases.

The 2019 Live Fearless Challenge was the first time Kiara publicly spoke about her diagnosis of Crohn's disease. For Kiara, hiding her chronic illness was so common that many of her close friends didn't realise the significant impact this disease had been having on her daily life.

Kiara continues to spotlight Crohn's disease and advocate for young people living with this often invisible illness.

Why did you think it was important to share your own lived experience with Crohn’s disease?  

As a young person living with Crohn’s disease, I think it’s important to share my story. Many people see young adults as people who are relatively carefree, healthy, and have a wealth of opportunities ahead of them. By sharing my experiences of diagnosis at 16, hospitalisation at 18, changing treatment plans at 21, whilst maintaining a typical ‘young adult’ routine, others can begin to see how chronic illnesses can impact someone of any age. Since opening up about my journey with Crohn’s disease in the 2019 Live Fearless Challenge, I have been able to connect with other young adults with IBD, most of them people I already knew in my social network who didn’t know how to share their story. These people have motivated me to continue to voice my experiences.

Describe how it feels to have an invisible illness. Give an example of when you have been misunderstood because of it.  

My favourite way to explain what an invisible illness to my friends is through ‘The Spoon Theory.’ The Spoon Theory is a term created by Christine Miserandino and is used to represent people living with chronic illnesses. Simply put, it explains that people with chronic illnesses, such as Crohn’s disease, have a limited amount of spoons per day. Each spoon represents an energy consuming task. For example, let’s say I have 4 spoons today. I wake up and have a shower – one spoon gone. I get dressed – second spoon gone. I make myself breakfast – third spoon gone. I go for a walk – fourth spoon gone. At this point I am now drained and have no energy left. I am now faced with the dilemma of whether I allow myself to rest for the remainder of the day or push myself and borrow spoons from the next day. This is the part people don’t see. When I’ve used up all my spoons and have to cancel plans people may view this as being lazy, uncommitted, or flaky. When it actually is an act of self-care. Through this campaign I hope to raise awareness of this aspect of invisible illnesses.

What are you up to in the area of advocacy for Crohn’s and colitis?  

On the 3rd of December 2020, The International Day of People with Disability, I was fortunate enough to have collaborated with ABC Sydney to spotlight Crohn’s disease. Through both a video and a radio interview, I spoke about the challenges of living with a chronic illness, including treatment plans, medical appointments, and lifestyle choices, as well as communicating your experiences to others. The visual aspect of this allowed people to see that those with chronic illnesses often ‘don’t look sick.’ This interview was broadcast over social media platforms and amounted 41.5k views, marking a huge win for those in the IBD community. To continue my advocacy, I am so excited to be a guest on a podcast later this month to talk about my social experiences living with Crohn’s disease, and address the stigmas attached. Stay tuned.

How are you planning to get your community involved with the Live Fearless Challenge?  

Every 6 weeks I attend the Ambulatory Care Centre at St Vincent’s Hospital Sydney for my Infliximab infusions. Over the past 4 years the centre has become a second home to me. The staff know all about me, my family, my studies, and my interests. We are constantly discussing new tv shows, pop culture debates, and new fashion trends. Last year, the staff were extremely supportive of me as an Ambassador for the Live Fearless Challenge. Together we took photos, shared stories, and reflected on my journey. This year, I am planning on incorporating my St Vincent’s family into my campaign in order to spotlight the amazing nurses, doctors, and volunteers who have helped me through my journey.

Similar to last year, I am also planning to complete the kms with my close friends. Last year, we all went bike riding and made a day out of logging the kms together. This year I hope to host more activity days to get more friends involved in order to raise further awareness.