“Be proud of who you are and celebrate your achievements when you’ve faced so many odds.”- Clare’s story
I have had Crohn’s disease since I was 13 years old, and now at 21 years of age I have finally started to reflect on my challenging journey, while also celebrating my wins along the way. Getting Crohn’s at the start of high school was one of the hardest things I have ever had to go through. While other girls were going through the normal stages of being a teenager, I was in and out of doctor offices and appointments, always out of school sick, and always in pain. I felt incredibly alone in this journey, while my family were amazingly supportive, I felt alone in school because no one truly understood the struggles I was going through every day. Sometimes even just walking to a classroom was a struggle.
I think one of the biggest struggles was my fluctuating weight because of the medication and being sick. I also struggled with going to school in general because of the fear of not making it to the bathroom (which happened from time to time) or just being in a lot of pain. Mostly, it was the fear of just being judged by other people. I remember there were times when I would be away from school at weeks at a time and my teachers would want to give me assignment extensions. However, I would refuse because of previous times where other students would judge me and say that I got an unfair amount of time. If I could say anything to my younger self, it would be to be proud of who you are and to celebrate your achievements when you’ve faced so many odds.
It was during COVID when I knew I needed to change my life and take a big leap of faith. I decided to plan out my goals I wanted to achieve in my life, and the main one was to make new friends and to find out who I truly was as a person. I decided that I wanted to move to Canberra to study at Australian National University, to finally experience the fun of being young that I had missed as teenager. In year 12, I worked and studied ten times harder, whether in the bathroom, doctors’ offices, pathologies, or even in a hospital bed. But I did it and did well. In the beginning of 2023, I moved from Sydney to Canberra without knowing anyone. It was the best decision I have ever made in my life because I finally found a group of friends that full heartedly supported me and makes my life filled with laughter and fun.
I’ve also learnt to find my voice and feel confident knowing that this is my body, and I know it best. There were times when healthcare professionals overlooked my opinion. For a while, I let it happen because I was just a kid. But when I turned 18, I realised I had a voice. One night, I couldn’t sleep due to unbearable hip pain, which kept getting worse. Looking back, I’d had some discomfort for months, but with Crohn’s, you get used to pain — so I ignored it. That night though, I could barely walk. My parents were away, so I called the paramedics. When they arrived, I explained my history with Crohn’s and said I thought it might be arthritis, something my doctors had always warned me about. But they dismissed me, laughed it off, and questioned me during the ride to hospital, even suggesting it might all be in my head. The next day, I was diagnosed with arthritis. I had been right. It was one of many times I felt dismissed by healthcare professionals — simply because I was an 18-year-old girl. But I’ve had Crohn’s since I was 13, and I know my body better than anyone. When I was 18, I got a new gastroenterologist, and for the first time in my life a medical professional looked me in the eye when talking to me about my disease. I almost went into shock when he asked me if there is anything he could to do for me to make things better for me. I guess the lesson from this is that I have a voice that I can use, and that there is a true power in finding a healthcare professional that will listen and be kind to you.
My Crohn’s disease has still been a struggle these last few years, and in the middle of 2024, I was diagnosed with Primary Sclerosing Cholangitis (PSC). It was at this point, when I knew again that I needed to make some changes with my lifestyle. I have started to go to the gym, limit my drinking, go on more long walks and go on some fun adventures. Being diagnosed with PSC readjusted my perspective on life. I have started to realise that we are only live once and we need to live out our lives as full as possible and do the things we want to do that make us happy.
I think this is the most amazing and beautiful thing about living with Crohn’s and other chronic diseases that we get to have an amazing and different perspective than others. Also, having Crohn’s has made me an incredibly hard worker in anything that I do, and has allowed me to understand that any challenges in my life that come my way I will be able to handle.