When Your Rare Disease Hits The Big Screen

I have Xeroderma Pigmentosum (XP). It affects about 300 people in the United States. Imagine how surprised I was sitting in a dark theatre and seeing a trailer for the movie Midnight Sun, which features Katie (played by Bella Thorne), who has XP. My sister immediately started tapping me and saying, “Oh my god, this is you!” My world started turning upside down. This disease that I knew about from the inside looking out, was suddenly being observed from the outside looking in.

At first, I didn’t know how to feel about this. But, I tried to keep an open mind. Now that the movie is out, I have learned that there are some pros and some cons to having your rare disease in the spotlight. Here are some examples:

Pro—A movie can bring a lot of awareness to your disease. You hear it talked about in interviews and read about it in magazines. It feels good to know that people are finally interested in what you are going through.

Con—Only some parts of way the disease is portrayed are true. Other parts are exaggerated, or just left out. I think they do this to make the characters more relatable, but it also makes the story less real.

Pro – In this movie, Katie had good friends. This shows that you shouldn’t judge someone by their disease or make fun of them. They are worth getting to know.

Con—Showing only parts of the disease can reinforce stereotypes, which might make it harder for real people with the disease to be understood or make friends.

Pro—A film can show how a person with a rare disease might feel, and that they want to experience the same things in life as others do – like finding love and having dreams and ambitions.

Con—The character probably has to die in the end.

I thought Midnight Sun was a sweet love story. I liked that Katie helped her boyfriend, Charlie (played by Patrick Schwarzenegger), achieve his dreams, while he also helped Katie achieve hers. She wasn’t just the sad “sick chick,” or an object of pity. The XP in the movie was very exaggerated. It made it hard at times for me, as someone with the disease, to follow the story line because of the inaccuracies. Those were also the parts that made the audience cry, which was a little strange for me. I did like the movie, though, because the relationships were relatable, and it was good to see that Katie was just a normal girl. Her XP wasn’t the most important thing about her, and it’s certainly not the most important thing about me.

One unexpected thing was seeing how other people reacted to the movie. I have read a few reviews that criticize the movie for objectifying people with the disease. They say how bad it is to turn an “awful” disease like XP into entertainment. The thing that’s strange about that is the reviewers don’t really try to understand XP either. For instance, one review said Midnight Sun “wins the award for ‘Most Bonkers Movie Disease.’” Another says, “What’s hot: The fact that Katie might die if she’s exposed to sunlight.” Many use words like “freakish disease,” “sufferers,” and “victims.” I am not a freak. I don’t suffer with XP, I live with it. And, I’m definitely not a victim. Using words like these may be even more harmful than anything in the movie itself.

As you can see, there are positive and negative sides to having your rare disease shown on film. I think people should keep in mind that there is a big difference between what is real and what is a movie. Writers, directors, and even reviewers should access reliable sources, instead of just stopping at the first thing they read on the Internet. If someone really wants to understand a rare disease, they should talk to talk to people who have that diagnosis. Include them in making the movies; let their voices be heard and their stories be told. Let the person with the disease be her own hero. And next time, please let the girl live.

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Amy "TitaniumAmy" Hansen is an Ambassador for Best Day Foundation, which takes youth with disabilities on action adventures, and for Positive Exposure, which utilizes the visual arts to bring humanity and dignity to human diversity.

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