Reality Check: On Photosensitivity representation

Reality Check is going to be a Series of Blog Posts focused on real life and things that affect it. This is the first one, but look forward to one on hypermobility, I will also try to cover preorders, posting to international readers, proofs/arcs, and a few other things.


Say what?

Photosensitivity is in the simplest form an allergy to light (most of the time this is just allergy to the sun). It presents in several degress (mild to “I have to live in absolute darkness”) and forms.

The most common is photosensitive eyes, which is when your eyes are very sensitive to light. It can also appear as a side effect of other illnesses (like lupus) or even of medication.

I was born with photosensitivity. In my eyes it is a medium-high degree, whereas on my skin/body it is mild-medium. Also, as far as I know, it is not a side effect of something, it just is.

Here are some facts about my own experiences:

  • I was diagnosed when I was 11-12. At the time I hated having my picture taken when flash was involved and wasn’t too happy with places that had a lot of bright lights.
  • Since my diagnosis I have worn Transitions/photosensitive glasses (I also need them to see). I can tell you how many leaps and bounds the technology has come along in the last 10+ years. (Quite a lot).
  • Talking of eyes and sight, sunglasses do NOTHING for me. Transitions help my eyes adjust much better. Computer glasses aren’t a good suggestion either. (Trust me, the number of times people suggest this, is beyond count).
  • Up until a few years ago I couldn’t wear contacts and even now, I can only do so rarely (they make some polarized special ones).
  • On a bad day, I can spend most of the day crying because my eyes cannot cope with the amount of light. This is not fun to explain.
  • I am sensitive to all kinds of light, not just the sun (it isn’t common to be affected by all kinds of light).
  • I get rashes and spots on my skin if I am exposed to too much light.
  • Fun fact: I tan easily (rather than burn).
  • I have never had a lack of Vitamin D (so no, not being out in the sun doesn’t mean I lack it).
  • I tend to wear tights and long sleeves or cardigans even in summer.
  • I can go to the beach but I have to be careful of my exposure to the sun.
  • I can also get a headache/migraine from being exposed to light.
  • Because I am so sensitive to light, I have good night vision.
  • I have a tendency to prefer warm soft lights if there is a need for one or having candles.
  • Fire is the only light source that doesn’t seem to trigger my allergy.
  • Allergy pills help a tiny bit, specially to not be as itchy with the rashes.
  • For years I would scratch the rashes and now I have so many tiny scars they sometimes look like freckles.
  • Sometimes I still scratch them, despite knowing it does me no good.
  • After having tattooed my thigh I realised I would scratch less so I got a tattoo on each arm/shoulder to discourage the scratching. It has worked to a degree.
  • There is very little representation of this condition in literature (I only know of two books).
  • Yes, I have heard the “you are a vampire” joke countless times, I will still smile but trust me, you’re not the first one to say it.
  • There is very little knowledge in general about it (or at least all the doctors I have had and dealt with don’t know much and as far as I’ve found, each person that presents this condition has a unique way of having it.)
  • I have adapted to it because I’ve had this all my life and it isn’t until people ask why I do certain things that I realise how odd they are.

Now let’s talk representation.

There is very little. I know of two books that actually try to talk about it. One of them is The Ice Garden by Guy Jones, which I have reviewed and enjoyed. However in it the MC isn’t affected by every light just sunlight so as much as it was delightful to read about it, it was still not the same as I have to live. Still, it was good and I didn’t feel annoyed but rather it left me wanting my own ice garden.

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The other book I know of, is Lovely, Dark and Deep by Justina Chen. I am still waiting to read this one but trust me, I am dying to do so. And I will post my review as soon as I have finished.

And well, that’s it. I do not know of any more books that represent this.

What I do know is that there isn’t enough information out there, and there is little representation. And I hope that this changes (not only for photosensitivity).