‘Five Feet Apart’, by Rachel Lipincott, is a movie-turned-book that revolves around two teenagers with cystic fibrosis who find love in a hopeless place hospital. Being a young adult romance, it is definitely geared towards an older reading audience.
Fast Facts on Cystic Fibrosis (CF)
- It is a genetic (inherited) disease.
- There is a problem with the way salts move in and out the body’s cells. This means that thick mucus builds up in all the wrong places.
- The lungs are most affected by CF. Thick mucus makes it hard to breathe, and leads to frequent infections
- The pancreas is also affected. This means food doesn’t get absorbed properly, which can cause problems with nutrition and growth.
- People with CF live to be in their 40s on average, because of damage to their lungs over time. Some people with CF may need a lung transplant to survive.
The kicker: People with CF generally shouldn’t be in close contact with each other – 6 feet apart is the rule! This is so that they don’t spread infections between themselves. That’s what makes Will and Stella’s budding love for each other so hard!
All the Feels
Having a terminal disease can be very emotionally overwhelming and frustrating. In ‘Five Feet Apart’, we get a glimpse into some of the emotions adolescents might have around their illness:
- disappointment at missing out on activities with friends
- isolation of time spent in the hospital
- feeling like a burden to their families
- body image issues due to changes related to their disease, or to medical procedures
- worrying about acceptance/burden of their illness in a dating relationship
- feelings about the impact of their disease on ability to start a family
- grieving the death of friends with the same illness
Despite all these emotions, sometimes they may feel pressure to ‘put on a brave face’ and bury these emotions.
What can you do as a parent?
- Be positive, but realistic about their disease
- Prepare them to take good care of their own health as they transition into adulthood
- Give a safe space for children to talk. Show that you are open to difficult conversations, and allow them to express negative emotions as well. Having a psychologist involved may also be beneficial at some point.
- Ask probing questions. What does quality of life mean for them?
- Be supportive, even if their choices don’t exactly mirror yours
- Encourage them to maintain a good support system, whether through friends, family or other members of their disease community.
Whew! This book was emotional, but sometimes that’s life. Ultimately, the value of a life is not in how long it’s lived, but how it’s lived.
The movie version of Five Feet apart was inspired by Claire Weinland, a young girl with cystic fibrosis was who had a Youtube channel to spread awareness about Cystic Fibrosis and did a lot of speaking and advocacy work. Unfortunately she passed away at 21 years after complications of a lung transplant. Click here to hear an excellent podcast interview with her mother on the ‘Living with Cystic Fibrosis’ podcast.
Interested in other children’s books touching on health conditions? Check out our bookshelf!
