Back to the light

I was pretty normal until my early thirties. Then my skin gradually became excruciatingly sensitive to light.  The condition grew so extreme that I had to spend most of my time in a totally blacked-out room.

Over the years I’ve tried everything to get out of the dark: acupuncture, meditation, hypnotherapy; spiritual healing, strange diets, internet pills; private doctors who could be persuaded to offer a telephone consultation or paid to come to the house.  Sometimes I did manage periods of improvement when I went for walks, Dracula-fashion, at dawn and dusk.  But these patches of hope were fragile and never sustained.  Lying in the dark with my skin on fire I often planned my suicide.

I survived because of the love of my partner and my family.  Because of talking books – I’ve listened to hundreds – that took me to different worlds.  Because of unexpected telephone friendships with other people living with chronic illness.  And because at my absolute lowest ebb, desperate to find something to do in the dark, I started to write about my experience [Girl in the Dark, published by Bloomsbury 2015]. [In USA, published by Penguin Random House]

Then something amazing happened.

The wife of a friend trained as a nutritional therapist.

She persuaded me to be her client number 2.

She looked at my whole case from first principles.

And she found the answer!  Or as I know now – in 2020 – the first part of the answer. I got well enough, thanks to her recommendations, finally, to track down a specialist in Mast Cell Activation Syndrome (MCAS) – and it turns out this is what I have.  MCAS was only identified in 2007, and recognised in the International Classification of Diseases in 2017 – so I managed, like so many other people with MCAS who’ve spent decades going from doctor to doctor trying to find out what is wrong, to get a disease before it officially existed.

I’m still very far from normal and I still have ups and downs – but my underlying improvement has gone far beyond anything I’d dared to hope.

I’m coming back to light, to life and to the world, after so long alone in the dark.  Each new step is intense and surprising and crazy and beautiful.  That’s what I want to share in this blog.

 

Useful Links

People with various degrees of light sensitivity find their way to this site from all over the world. Here are some links which may be useful, in response to the many questions they have asked.

https://lightaware.org/ We need to talk about light! A growing number of people worldwide experience severe and painful reactions to new forms of lighting like CFLs and LEDs. This charity aims to raise awareness and combat social exclusion.

https://www.lupusuk.org.uk/eclipse/ The Eclipse group is part of Lupus UK, but helps people with severe light sensitivity whatever the underlying cause. They provide an excellent product list.

Thick black wool felt is the most light-protective material. I got mine from www.anglotechnicaltextiles.co.uk. Ask for a sample first – it smells a bit.

This scientific paper describes a case in Sweden, which began with a burning face when using a computer and progressed to full-blown extreme cutaneous light sensitivity all over, even through clothing. Olle Johansson Doc

2 comments

  1. Hi
    I would like to thank you, that you wrote this book. My son is 7 and since he was born he has no skin if we wont apply steroid creams. I always knew that people suffering but I heard so many telling to them you are layer,and I couldn’t persuade them that this is true,that unfortunately it is part of life . You help me a lot to understand ,and this chapter where you wrote some people say they will pray for me and you said it is OK

    1. Dear Gosia
      I’m so sorry about your son. Sadly there is a lot of ignorance and incomprehension out there. I send you both good thoughts. Stay strong! Anna

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