Seeing the Trailer for 'Midnight Sun' as a Person With a Sun Allergy

So I’m seeing this trailer everywhere. Everywhere. Spotify. Facebook. Instagram. Randomly following me around the internet.

It’s the trailer for the new teen romantic tragedy “Midnight Sun.” It’s about a girl with a sun allergy.

Caveat: this is not the same sun allergy as mine — xeroderma pigmentosum (XP) and solar urticaria are very different — but it’s still the first representation in the media I’ve seen of any sun allergy so I’m going to share my thoughts.

While I appreciate this is bringing sun allergies into the public eye, I struggle with a few different aspects of the portrayal. I want to share these objections, some of my own experiences and how I think the film could be improved.

1. XP impacts about 1 in 11 million people in the U.S. and Europe. There are higher concentrations in Japan, North Africa and in parts of the Middle East. Regardless it is the rarest of the sun allergies and does not provide an accurate window into the lives of millions of people struggling with polymorphic light eruption (PMLE), solar urticaria and other more common photosensitivities caused by things like lupus and certain prescription drugs.

2. The vast majority of sun allergy patients do not, I repeat do not, cope with their disease by inverting their schedule and staying up all night. This is inaccurate. It also perpetuates harmful vampire comparisons that for some reason people always feel they have a right to make when you tell them you’re photosensitive.

3. The portrayal of XP in “Midnight Sun” is not medically consistent with the majority of cases. Individuals with XP have noticeable freckling on their face and hands, they often have visual complications and some face neurological decline as well. Some individuals with XP also experience blistering burns from their sun exposure. The trailer shows no evidence of addressing any of these real symptoms of the disease it claims to portray.

4. Is there anyone out there with a sun allergy who wears ripped jeans and short sleeves? You cover your skin. That’s sun allergy 101. Why does she have holes in her pants? I guess she could use sunscreen, but then she’d stain her pants? I don’t understand.

5. I believe if you don’t trust someone enough to tell them about a chronic illness you shouldn’t be dating them. I told my boyfriend about my sun allergy before we even got into a relationship — if it was going to be a problem for him, I wanted to know. Ahead of time.

6. Please don’t turn my sensitivity into something tragic. While XP generates an increased risk of skin cancer that is indeed serious, most sun allergies are just facts of life for the people who live with them day to day. I’m not a charity case. Please don’t generalize sun allergies that way.

7. I’m sensitive to fluorescent light. While this is unique and not all persons with sun allergies experience it, there’s still something highly disconcerting about hearing a trailer like this touting how she never goes in the sun and then showing repeated scenes under UV-releasing florescent light.

So how would I do things differently?
1. Let’s show some real sun allergy treatment and prevention strategies (not inverting a schedule and staying up all night). Let’s see someone using an umbrella and struggling with sunscreen that leaves stains and trying to buy workout pants to wear when it’s 90+ degrees outside. That’s what having a sun allergy looks like for many.

2. Let’s show a relationship where neither party lies about their chronic illness.

3. Let’s give some reality to the actual symptoms of whatever sun allergy is portrayed. For me that means tremors and migraines and nausea. For XP that may mean a frightening increased risk of skin cancer. For PMLE, it may mean an itchy rash that can last for weeks. I saw no symptoms in the “Midnight Sun” trailer — which also perpetuates the “delicate flower” myths that often follow those who have sun allergies.

4. Let’s show a parent encouraging their child to live life to the fullest with their chronic illness rather than unnecessarily restricting their behaviors.

I appreciate the attempt at portraying a photosensitivity on the silver screen. These are my thoughts on how we can do better next time. When have you seen your chronic illness in the media and how did these portrayals make you feel?