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I watch as the lady on the stall next to me squints at the screen of her mobile phone, involuntarily massaging her forehead, her eyebrows creasing up as she moves the phone closer and further away, trying to find a comfortable distance to read. “Are you ok?” I venture. She looks up distractedly and vaguely in my direction, rubbing her fingers across her forehead again as though to try to relieve some pressure. “Yes, yes I guess so”, she says, then after a pause “it’s just my eyes these days, perhaps I am getting to that age ….”. Her voice trails off, uncertain. I ask her how she is feeling and she tells me that ever since she got this new phone she’s had headaches, and pressure behind the eyes and sometimes something bordering on motion sickness. Has she ever felt like this before, I inquire? No never, just since she bought the new phone.
This exchange has played out every single week since I first discovered that LED light sensitivity is ‘A Thing’. A new laptop purchase leads to nausea, a much anticipated new mobile phone leaves someone with headaches, a move to a new office area has suddenly made an individual feel really unwell – often perhaps unable to pinpoint the cause. In the four years or so since I myself became unwell I have met hundreds of individuals who have described similar symptoms – a feeling of eyestrain or eye problems but when referred to the optician, no visual deterioration is found. Doctors look at you blankly and imply that you are making it up. Perhaps I should try some anti-depressants they suggest? No thanks, I just don’t think it’s that.
In February 2021 several things happened at once. I had to swap from using the client laptop to another provided by my company. I bought a brand new high definition LED monitor, because occupational health told me that it would be better than looking at a laptop. I installed new integrated LED light fittings in the room I worked in, and my husband finally bought the large flatscreen TV that he’d always wanted. Within about a fortnight I was struggling to ‘look’ at anything. I took regular breaks, adjusted my desk, used a blue-light filter, put the monitor in night mode. Nothing eased the pressure building behind my eyes. Even painkillers had no impact on the weird pressure sensation. I took a weekend off, but the pressure remained. I struggled on until the Easter holidays when I took a full week off. By this point it was hard to look at the road as a passenger in a car, I was unable to read a book and I couldn’t even do my knitting. I returned to work the following Monday but by 10:30 I couldn’t continue. I never worked again.
Actually that’s not entirely true. I did work again. I worked at navigating through my company’s HR process and through ACAS. I worked at chasing down countless medical professionals and eye specialists. I worked at finding ways around this new situation I found myself in. As it turns out, it’s actually quite hard to manage a world without a modern smartphone or computer access. Software developers tend to assume that the only people who don’t have phones are ‘old people, and really they should just learn, right?’. The genuinely disabled are forgotten and ignored. A throwaway comment to my line manager about ‘I might as well just sell cupcakes’ turned into a fully-fledged baking business with regular slots at the main food festivals in the area. It turns out that people like bakers far more than they like consultants, and I am popular for the first time in my life.
Life has become a series of absurd workarounds, moments of helplessness and also of genuine joy. Being sent reeling by the upgraded modern, energy-efficient lighting in the local hospital outpatients and having a blood test in the equivalent of the broom cupboard which still has old lighting – bit of a low point. Not being able to enter my dental surgery because of their upgraded super-swanky integrated LED strips – definitely not cool. Equally, each problematic situation I’m presented with seems to strengthen and reinforce neurological pathways that I couldn’t have dreamt of ten years ago. Aural processing has taken over from visual processing, my market patter is swift and I can sell as well as any trader on the market. Primarily I have learned that there are multiple ways to solve a problem, and that although people might be surprised at the latest novel suggestion, most are willing to give it a go.
As you can see from this blog, circumstances have not yet succeeded in getting me totally down. The software that allows me to write this is almost certainly not permitted on site. I have a large collection of iPhone 6 phones – the original, yes I am retro – which support an increasingly sparse number of apps. Twitter stopped working completely last week and internet shopping and online banking are a distant dream. However, the hospital debacle caused me to stumble on a charity that supports people like me, and those whose condition is much worse. It is difficult to explain the concept of light-sensitivity or light-disability to people when I look perfectly healthy and my normal self, but believe me there are thousands of people out there who are affected to a greater or lesser extent by these new lighting and screen technologies.
The charity LightAware campaigns on behalf of not just people like me, but for thousands of individuals who are now digitally – and socially – excluded from a world with ubiquitous artificial light. They are a small charity that has already had a significant impact – when the EU moved to ban traditional lighting like incandescent and halogen bulbs, LightAware managed to secure an exemption at the eleventh hour to allow light-sensitive people continued access to light bulbs and fittings that were safe to use in their homes.
Artificial lighting affects everyone to a greater or lesser degree, and seems to most affect those with Autism, Migraine and other prior neurological conditions. LightAware campaigns on behalf of those people who are significantly more affected than I am. People who are trapped in their homes because of the rollout of LED street lighting and car headlights. People who have no mobile phone or computer access whatsoever, because their reactions are so severe. They provide a telephone support line and advice to people who have suddenly begun to experience adverse reactions to modern artificial light. Most importantly, LightAware provides a focal point for people who have previously felt isolated and misunderstood – it is a real relief to feel believed and understood, to be listened to for the first time in a while. If you have been affected by lighting in your office or home environment, or from your computer screen or your mobile phone, then please let me reassure you that you are not alone. There are so many more people out there who are affected, and we would like to bring them together to share their experiences.
If this resonates with you, or even if you would like to support those suffering from what is in effect a hidden disability, then it would be wonderful if you could check out the LightAware website and consider supporting the charity both in terms of fundraising, donations and most importantly raising awareness that the charity is there to help people. We want to find the light-sensitive and the light-disabled, and to help them to reconnect with society. If you are able to understand the issue, and still have the ability to access a computer and the internet then your skills are invaluable to us. Please spread the word and tell us your stories, we need to help the rest of society to understand that this is a large problem and not just limited to individuals. Whilst I am no longer on site, I am more than happy to speak to anyone who feels they might be affected or who would like to know more about the condition and the charity. Thank you for listening.
by Rachel
Blogs are written by LightAware supporters in a personal capacity
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