If you’re a part of the cystic fibrosis community I’m sure you’ve heard the buzz surrounding the new movie produced by Justin Baldoni, Five Feet Apart.
The movie is about two people with cf who meet/fall in love in the hospital, having to cope with the difficulty of living life by the 6 foot rule, where people with cf can’t be within 6 feet of one another for fear of cross-infection.
It’s another teen romance a la Fault in our Stars, which has resulted in mix reactions.
Mixed reactions about Five Feet Apart
Some people in the cf community are all for spreading awareness even if there are some inaccuracies, whereas others are concerned about romanticizing a disease like cf.
I haven’t read the book or seen the movie, but what I do know is that people with cf were involved in the script, including Claire Wineland before her passing.
The fact is, as of March 15 when the film comes out, people are going to want to talk about it with the people in their lives impacted by the disease. And while we all have our opinions about it, and can debate and argue about it til we’re blue in the face, I think it is more productive to use it as an opportunity to own our cf story.
What I’ve noticed as the cf community engages in a dialogue around this movie is there is a lot of fear about what a representation of cf will mean for US: From parents being concerned about their teenagers having to explain their disease, to those who have lost loved ones to cf feeling anger at a disease that took so much away.
Yes, there are teenagers with cf whose life is far from the oxygen toting, hospital dwelling life of the teens in the movie, who haven’t even talked or thought about death with their bffs, thanks to drugs like Orkambi, Symdeko, and Kalydeco. And I can imagine the questions and conversations a movie like this might create are scary and uncomfortable.
Every person’s story is vastly different so we are never going to agree on the merits and shortcomings of the film. But what we can do is spread awareness about cf, which is good for everyone. It means more money raised, more organ donors, and more understanding of a rare disease that has impacted all of our lives both positively for some and heartbreakingly for others.
Being a cystic fibrosis advocate
I grew up with the attitude that because I am a person with cf, I am responsible for being an advocate and spreading awareness about my disease.
This takes the form of me being very open about my illness, welcoming questions, and sometimes having tough conversations.
Is it fair that I had to talk about my early death at the age of 12 with my classmates? No. But it did prepare me for life as an adult, explaining to my boss why I might be too tired to come into work, and to my colleagues why I cough a lot; having tough conversations with my husband about how my cf will impact our future; and with my friends when it keeps me home during times when I’m feeling sicker than usual.
I talk a lot about these topics in my book Growing Up Sick, and it’s a huge reason why I wrote it in the first place.
Raise awareness about cystic fibrosis during conversations about Five Feet Apart
I’m calling for the cf community to put our differences aside and come together and commit to raising awareness for our illness when this film comes out. So despite what side you’re on, here are some ways to do that.
- Encourage donations. Share that there are many people in the cf community who are struggling, just like the teens in the film and that’s why we need to keep raising money for the CF Foundation and organizations like Claire’s Place Foundation that help cf families. Share what you do to raise money or direct them to current fundraisers and events happening soon.
2. Share your cf story. For me, that will mean sharing the difficulties of not being able to connect in person to my friends with cf due to my Burkholderia Cepacia. It will mean sharing how hard it is to see my friends with cf struggling or even passing away. And it will also mean talking about the advances that have impacted my health in the past few years, yet how I still have to manage my treatment regimen every day. The more people know about cf, the more they can advocate and support you!
3. Use the conversation as an opportunity to to highlight how differently cf affects everyone. For me, I will share that although I culture a deadly bacteria, and had a tough time growing up, I’m pretty healthy now thanks to an active lifestyle, luck, and life changing medications. Yet at the same time, I have friends who have passed away from the same bacteria, who had the same mutation as me, were just as active as me, and needed a lung transplant sooner in life, and who have vastly different experiences.
4. Raise awareness about organ donation. Stress the importance of being an organ donor, that many with cf will eventually need a transplant and your friends can do their part by registering as an organ donor and encouraging others to do the same. You can direct them to the Donate Life page to get started.
5. Educate, educate, educate! Knowing there has been a lot of cf involvement in the film, I’m hoping inaccuracies will be minimal. But, this is Hollywood, is limited to a couple hours, and they may take liberties or not have time to address everything. In any event rather than dismissing an entire film due to inaccuracies, use the conversation as a chance to educate about what your treatment regimen looks like, highlight the need for more research and drug discovery, and share what advances you’ve seen in your lifetime, pointing out that many with cf still need life saving treatments.
As a community, we have to come together and use the buzz for good, rather than let it divide us, and to use the CFF’s words, focus on what we can do to look toward a future where those with cf have more tomorrows.
What other ideas do you have to use the buzz around Five Feet Apart to raise awareness about cf?