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17 Painfully Real Descriptions of Light Sensitivity

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Editor's Note

This story has been published with permission from all individuals quoted.

Whether you deal with unrelenting headaches or migraine attacks or the side effects of a traumatic brain injury, exposure to light often makes just about everything feel worse. It can affect the intensity of other symptoms, trigger an episode or flare, or simply be a big pain and disruption in your day. Research shows that photophobia, as this form of light sensitivity is often called, can lead to a whole host of other problems, including:

And this is just a short list of issues light can negatively impact! It should be no surprise then why so many of us willingly confine ourselves to the pitch-black comfort of a dark and quiet room — if only to steal a few precious minutes away from the overwhelming brightness of the outside world.

Another thing I know about people with chronic illness: they sure can vividly describe their symptoms. Their experiences can be humorous, poignant, inspirational, a call to action and everything in between. I have always found the collective sharing of our stories brings us together and reminds us that we are not alone in our struggles. With that in mind, I turned to The Mighty community and social media to hear directly from people who live with light sensitivity every day. These are the powerful descriptions they shared.

  1. “It feels like bright light squeezes my eyeballs together, like lemons being squeezed with some pepper mixed in to make them sting. When sudden light flashes, it feels like a hammer hit my eye and it sears through my eye to the back of my head.” — @willemijnkamerling
  2. “When I am looking at my computer screen and phone all day, I get terrible headaches and feel sweaty and weird at the end of the day from looking at the screens… Also, I have a high sensitivity to fluorescent lighting. It causes me to have an increase of inflammation and and can even cause my skin to turn bright red and contribute to a flare up (like the days I have to go into the office). It is overwhelming how much the light bothers me these days.” — Mindy
  3. “I avoided an ER visit once for a ridiculously awful migraine just because I knew the bright lights in the ER would be excruciating!” — Teresa
  4. “I have migraine, and I have a constant sensitivity to light and it gets worse when I have a migraine attack. It’s like your eyes get ‘burned’ by the light and it hurts and at the same time it makes the migraine worse. That’s why I have to be in a dark room when I have a migraine.” — @moo_nligh_t
  5. “The front door being opened in the morning without me being prepared has ruined more mornings than I can count. Now I put sunglasses on before it gets opened. I got blackout curtains in the bedroom and the bathroom window is covered too.” — Amanda
  6. “I just got back from my physical therapist’s office where I was using a pillowcase as an eye mask to block the light. The assistant came into the room, saw me and said, ‘have you seen Bird Box?’” — Angie
  7. “Bright light is the devil. The pain inflicted on my eyes would be unbearable. It felt like they were being stabbed by tiny little pins.” — Jaime
  8. I avoid selfies and sunlight due to light sensitivity from chronic migraine. When I do go out, I wear Theraspecs. I feel like a vampire sometimes.” — Aparna
  9. “I would drive around in a car with my eyes closed and my head under my jacket to obscure the sunlight showing through my eyelids during a migraine attack. I also get tired and irritated eyes that really take a toll on how my head feels. Eye pain and fatigue isn’t something I can try to ignore and ‘move past.’ The impact of light sensitivity due to migraine in my life is significant. The extreme bright, sore, gritty and often painful feeling in my eyes keep me from enjoying the outdoors, working on my computer and using my phone.”  — Erica
  10. “It impacts my daily life. I miss out on collaborating with the team, as being in their space for too long can bring on the aura. It’s unseen and I’m pretty sure people don’t see me struggling and so they don’t believe it. Some days I’m just hanging in there!” — Chris
  11. “A throbbing neuralgia radiating from the back of the eyes and slowly pulsating up to the temples and back again so as to create a dull, maddening pain.” — Casey
  12. “My sensitivity varies day to day and hour to hour. When it’s really bad it makes me spacey and out of it. Car lights at night are horrible. I no longer drive at night and even have difficulty being a passenger. The worst thing for me is driving on a sunny day. You are around a lot of trees or buildings and you are constantly exposed to light, shade, light, shade… it’s like a strobe light effect. It is very debilitating to me. Most people don’t understand how horrible this is.” — Cindy
  13. “It’s like driving in thick fog in the dark with your headlights bouncing off the fog back into your face. You struggle to see what’s in front of you, trying to navigate this metal beast between some lines and not hit anything. That stress is like the stress I feel trying to function in light: squinting, anxiety symptoms, trying to push out distraction so I can focus on the task at hand. The lack of being able to see is similar. All sight hurts so my body is automatically pulling away from all sight, so I have to struggle to see (and then doctors can’t understand why I didn’t read the 10-page discharge notes), straining to make sense out of the limited vision I can force my body to process. Stressed muscles, nausea, eye pain, facial pain, and then the headaches and migraines can set in.” — Kathleen
  14. “Feels like a microscopic hot needle slowly sewing a quilt in my eye. Also, that feeling when you open the fridge in the middle of the night.” — Emma
  15. “Sometimes it feels like my eyeballs are sunburned. Sometimes it’s sharp stabbing pain, or an ache. Often it makes my brain feel like it’s being squeezed inside my head. Light sensitivity often makes me feel nauseated, fatigued, sore throughout my body and dizzy.” — Roslyn
  16. “I have had light sensitivity, vestibular migraine and vertigo for several years. Light sensitivity in particular is hard to manage because everything important happens in the light… it only affects my right eye, if light gets into my eye at a certain angle, then my vision narrows and I immediately experience terrible eye strain, headaches, loss of balance, vertigo, nausea. When I’m out in public, people wonder what’s wrong because I’m wearing sunglasses all the time. The pain is difficult to describe but I find it almost surreal, nightmarish, very exhausting. Unless you’ve experienced light sensitivity and the other symptoms, you have no idea how limiting it is, how exhausting, how it affects every aspect of one’s life.” — Andrea
  17. “It hurts sooo much! It doesn’t just affect the eyes, I get instant headache pain, nausea and can feel like I might pass out. Any bit of light, be it artificial or sunlight, feels like hot needles directly into my eyeball and it spreads around my eyes too.” — Danni

Getty image by Ralwel.

Originally published: August 20, 2019
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