I am a 45 year old female with Lupus and photosensitivity. I have been retired on health grounds from the impact of working environments due to being photosensitive, particularly to artificial lighting.
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. The worst kind of lighting for me are energy saving bulbs but there are none that don’t affect me at all.
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 my 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 yet to meet anyone who prefers modern lighting. It concerns me greatly that it could be having a harmful effect on people without photosensitivity even though they can’t feel it. 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?
Discovering LightAware has been a big positive for me as I have been offered support, a wealth of information and I have found the LightAware card invaluable, it makes such a change for people to take notice and make the changes I need so that I can have some degree of normal living.