Jess, UK

I am a 50-year-old female with Lupus and photosensitivity. I have been medically retired from employment as a civil servant due to the impact of the working environments on my photosensitivity, particularly to artificial lighting, and an inability for the necessary changes to be made to accommodate my needs.

I cannot tolerate any form of overhead lighting and have up-lighters in my home with low wattage bulbs. I am affected by computer screens, mobile phone screens, car lights, street and road lighting, shop lighting, in fact anything that is lit – even fairy lights on the Christmas tree.
Exposure to artificial lighting causes the immediate effects of dizziness, racing pulse,
headache, disorientation, nausea and on occasions numbness to my face; I then go on to experience flares of my Lupus symptoms such as fatigue, joint pains and swelling and a general feeling of being unwell. These symptoms are a product of the cumulative effect of exposure to light so they are unpredictable and can occur up to a week after exposure.

I therefore have to carefully plan events to make sure I have the space to recover from feeling unwell; it is not possible to avoid artificial lighting entirely without giving up any quality of life. My family are very understanding – my twin sister also has Lupus with photosensitivity – even my grandchildren are able to understand to a degree, but I try to balance the need for protecting myself with being able to enjoy time with them. I have UV filter screen on my car and wear factor 50 sun screen every day but no matter how I cover up with clothing, the artificial light still affects me via any skin exposed.

I am frustrated by laws that are made from a general assumption that modern lighting is better. When my sister and I have the same conditions but different tolerances, how can one rule be made for the general population without consideration for the additional and varying needs of so many?

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