Good morning, good afternoon, and good night (depending on what time you’re reading this)! Today, I would like to share some recommendations of media that provides accurate insights on the genetic diseases I have—cystic fibrosis and type 1 diabetes.
Cystic fibrosis is a chronic illness that causes my lungs to produce a lot of extra mucus that is sticky and easily breeds bacteria. It also affects my digestive system, causing difficulty in keeping my weight up. Type 1 diabetes is a pancreatic malfunction where your body ceases to produce insulin. Diabetics must calculate how much insulin to inject into their system to keep their blood sugar from going too high or too low, both of which can have serious effects in severe cases.
I haven’t read many books or seen many movies that have characters with either genetic disease, but I have been able to find a few over the years. Whenever I do, I am elated— I love reading about or seeing onscreen characters who have the same struggles as me.
The first piece of media I would like to talk about is Ghosts by Raina Telgemeier. My uncle gave me this book when I was younger because it has a character with cystic fibrosis in it. He even got me a signed copy! Ghosts is a middle-grade graphic novel that focuses on two sisters, Catrina and Maya, who have just moved across the country. A main reason for their move is because Maya has CF and her doctors recommended salt air to help with her lungs, so they move to the coast. Throughout the book, Maya is shown doing breathing treatments, using a feeding tube, and walking around on oxygen. I do not have a feeding tube or need to be on oxygen, but many people with CF do, and these are important things to depict. I truly love this story. There is a heartwarming message behind it, and the art is beautiful. So if you like graphic novels (or have read Smile by the same author), I encourage you to pick up this book!
The second one I would like to talk about is The Babysitters Club series by Ann M. Martin. I really liked this series as a kid, and they started making it into graphic novels years ago, which I also ended up loving (Raina Telgemeier even did some of them)! At the beginning of the series, there are four girls— Kristy, Mary Anne, Claudia, and Stacey— who decide to start a babysitting organization. At first, Stacey acts a little strange when the other girls offer her treats and declines, telling them she’s on a diet. After a while, we learn that she actually has type 1 diabetes but was afraid to tell her new friends. Throughout the series, Stacey is seen meeting with her endocrinologist, giving herself insulin, testing her blood sugar with a glucometer, and making educated choices about what she eats. Although the way she treats her diabetes is different than the way it is often treated today due to the series taking place in the 1980s, I still found parts of her diabetes management relatable. I wasn’t diagnosed with diabetes yet when I first started reading this series, but after I was, the series became even more of a comfort series because it had a diabetic character— a rarity for me to find.
The third piece of media I will discuss is Five Feet Apart by Rachael Lippincott. This is the book/movie I refer to often when telling people I have cystic fibrosis. Sometimes when someone does not know what CF is, I’ll ask if they’ve seen Five Feet Apart, and when they say yes, I explain that that is what cystic fibrosis is. This book revolves entirely around people with CF. It mainly takes place in a hospital, where we meet Stella and Will, two patients with CF who are admitted to the hospital for the foreseeable future. They meet and fall in love; however, it is impossible for them to be together because people with cystic fibrosis must stay six feet away from each other or they could share bacteria that wouldn’t harm someone who doesn’t have CF but is very dangerous to people who do. Throughout this book and movie, characters are shown doing breathing treatments, taking the many medicines people with CF have to take, meeting with doctors, and wearing oxygen tubes. This movie changed my life; I had never gone to the movie theatre and seen a movie about people with cystic fibrosis before. I had never seen a piece of popular media that portrayed people doing the daily things I have to do to manage CF. It was wonderful to see such representation. Hence, I would highly recommend Five Feet Apart in book and movie form. Just be aware that it talks about a lot of serious, heavy topics. (Also, be aware that you will most likely cry.)
Next, I’ll talk about What Happens After Midnight by K.L. Walther. This is a much more lighthearted book. The main character, Lily, has recently broken up with her boyfriend Tag even though she still loves him, for reasons I won’t spoil. One day, she receives a message asking her to help the Jester with his school prank (the Jester is a senior tradition at her school). The Jester turns out to be Tag, and so they have to spend the night in proximity while carrying out Tag’s prank. Tag is diabetic, and throughout the book he is shown wearing and using an insulin pump, keeping juice on him in case he needs to bring his sugar up, and even going through a severely low blood sugar. This representation amazed me. It was the first time I had read a book where a character had an insulin pump, as well as the first time I had read a book where a character had low blood sugar and it showed all the effects that can happen to your body, like shaking, getting sweaty, and suffering from immense fatigue. I was very touched to read this book and see so many relatable things that I barely, if ever, get to read about. I would definitely recommend this book for its accurate portrayal of diabetes, as well as for the plot and romance.
The final piece of media I would like to discuss is Salt in my Soul. It is a documentary about Mallory Smith, a woman who had cystic fibrosis and only lived to the age of 25. This documentary focuses on her life with CF and all the struggles she went through. The documentary shows her doing daily treatments, meeting with doctors, and even having a lung transplant. Salt in my Soul is a large window into the life of someone who is deeply struggling with cystic fibrosis and how it affects them physically, mentally, and emotionally. I highly encourage you to watch it if you want to learn more about CF. Be aware that it tackles serious and heavy topics, but I would definitely recommend it. (I cried a lot when I watched it.)
I hope to find and consume more media that has characters with my genetic diseases, although from what I’ve seen so far, options are limited. This is a main reason why I aspire to include characters with CF and diabetes (as well as other chronic illnesses and disabilities) in my novels. I always love seeing representation in the media I consume, and I want to help people feel seen in the things I write. To close, I will provide a simple but significant statement from the great Dr. Seuss: “The more that you read, the more things you will know.”