When I was 18, I was told that I would have less than 5 years to live without a liver transplant.
I was 13 when I got diagnosed with multiple autoimmune diseases and other conditions. Autoimmune Hepatitis, Primary Schlerosing Cholangitis and Ulcerative Colitis, and as of 2018, Osteoporosis and G6PD Deficiency. Because of this, I constantly felt lonely and invalidated, as I felt like my life ended before I even grew up. I was isolated in school as I could not connect with my peers, and the envy I had didn’t help things.
One of the biggest issues for me was feeling invalidated. My symptoms mostly affect me from the inside. People can’t really tell that I am sick. The only visible sign would be the yellowish tone of my skin due to jaundice, caused by bile buildup due to my failing liver.
Later on, I became a beneficiary of MakeAWish foundation Singapore, and my wish was to spread awareness on chronic illness, so more teens like me would not feel as desolated as I did. With the help of my Wish Granters Amanda, Vivien and Darius, I published my book, How to Be A Good Patient.
The book details most of my medical journey as a full-time patient. It includes my experiences of getting diagnosed, putting up with the daily medication and how I dealt with the symptoms and feelings of inadequacy. It also covers how I endured the transplant and recovery in order to be alive today.
With my book, I hope to spread awareness of chronic illness and drive the notion that not all illnesses are visible. Chronic illness can hit anyone at any age and is often only diagnosed when the symptoms are prevalent and the damage has already been done.
- Y.K Riley