A NOTE FROM OUR WISH TEAM
It was truly an honour to have been able to work with YK on her very special and giving wish.
How To Be A Good Patient is a compelling read that opened our eyes and heart to what it is like being a patient with chronic illnesses. YK describes her daily struggles with wit and tongue-in-cheek candor, making the book delightful and thought-provoking at the same time.
We sincerely hope that you can support YK's cause by purchasing this book so she is able to fulfill her wish of creating awareness of invisible chronic illnesses.
The team also wishes to thank everyone who has helped make this wish come to fruition in one way or another.
Amanda, Darius and Vivien
We’d love to hear from you if YK's story has touched has touched your heart or inspired you!
MY MAKE-A-WISH STORY
It started when Make-A-Wish Singapore approached me in my hospital bed and asked me what wish I would like to make. I took months to decide. I wanted to opt for a wheelchair at first since I had a pathological fracture, and I figured that if I was going to be so prone to fractures I wanted to save myself from the pain of hobbling about with a crack in my bones. I could also share the wheelchair with my 80-year-old grandma who doesn’t do well with walking. But I realized sharing would be inconvenient, and I could do so much better with my wish especially since it wasn’t confirmed I’d need a wheelchair for a lifetime.
And so I decided to do some research on what other children wish for. Some of the wishes involved meeting their favourite celebrities or going on a trip with their families. I’m not the type who likes to meet celebrities. I preferred supporting my favourite YouTubers and Bands by watching their videos and buying albums instead. As for vacations, I wasn’t in the health for that, and I was not really interested anyway.
During that time, I was still schooling. I often took the MRT like everyone else, and due to my bad joints and fatigue, I would sit down even when the train is crowded. In the span of a few months, I had been asked to give up my seat at least 3 times, despite there being other students or young adults also sitting down. I was also not occupying the reserved seat.
It dawned upon me that many people immediately assume that young people are always healthy. Young people don’t get sick. Young people, especially students, don’t deserve to sit because they “have more energy than older people”. It’s not to say that I’m against the elderly or those in need to get seats. It just aggravates me that people always assume things from their own perspectives. They never take that student’s heavy backpack with a laptop and a bundle of books into account. They never consider that the student might be sleep deprived because of projects or studies, and could possibly faint if they are made to stand the hour-long ride to their destination. The thought that that student might be suffering from joint aches, fatigue and stomach aches never crosses their mind. Because “young people don’t get sick”.
And hence I found a goal for my wish. I wanted to let people know that chronic illness can hit anyone at any age. The elderly have a higher chance, but it doesn’t mean that the young are safe from such ailments. Ailments that are often invisible to others while you suffer internally, and will never go away for a lifetime. That is why many chronic illnesses are also known as invisible illnesses.
I wish for people to stop making assumptions as they please when it comes to judging who is able and who is not. Chronic illness doesn’t care if you are young or old, male or female. Chronic illness doesn’t care if you can’t eat because you’re too tired, can’t move when your muscles ache. Chronic illness doesn’t care if you have an appointment that day or if you wish to look your best. Just because someone looks good on the outside doesn’t mean that their bodies aren’t failing them on the inside.
Everything I wrote in this book is from my true experiences as a full-time patient. It is a mixture of my thoughts and what I have gone through. I want to let people know the ups and downs of chronic illness, how important support from friends and family is and how it feels to rely on pills to survive. This book is not meant to glorify any illnesses or to dramatize anything.
I hope other patients can relate to this book as well. Chronic illness being terrible is an understatement. My book will not tell you how to look on the bright side or push false hope on anyone. I wrote it based on my own life, and life often does not have much hope, especially one like mine. I wrote about how it feels to be limited, how frustrating many things are and how it feels to be left behind. If you are a patient as well or know someone who has a chronic illness, please note that every disease affects one differently, be it different symptoms, pain tolerance, medicine effects, and their own capabilities. Never compare two patients’ ability to do something, even if they are at the same stage of the same disease, under the same medical treatment. Though it doesn't mean your life is doomed if you have a chronic illness. There will be something that only you can do, like how my illness led me to write a book.
At the end of the book, my mom has written her thoughts on being a parent of a child with chronic illnesses. It gives a bit more insight to the book, and I think most parents will be able to somewhat relate with her feelings of taking care of a child with illnesses, as it is no easy feat.
With that, thank you for reading this wall of text, and I hope you’ll enjoy my book.
YK is a 18-year-old teenager who will be starting Year 1 of polytechnic for the 3rd time in 2019. She was diagnosed with Autoimmune Hepatitis with Primary Sclerosing Cholangitis and Ulcerative Colitis in 2013, and Osteoporosis in 2018. She has also recently undergone a liver transplant due to her condition.
YK is also an avid dog lover (By avid, she means she wants to own at least 8 dogs in the future). She treated her first dog as a sister who grew up with her, and her current dog as her daughter (Being a young pup mom is great! Until you land flat on the face because your child is too strong). She also loves card-making and would like to make her own scrapbook someday (when she’s not too lazy to). She prefers to write on paper as she loves the feel of the ink flowing, but she agrees that typing is a faster method of writing.
She wrote this book with the hopes of enlightening others on chronic illness (and to get back at those who judged by appearance alone).
Primary sclerosing cholangitis
KK Women's & Children's Hospital
National University Hospital