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.
Addition posted 24 May 2021:
Did you find my site when searching for information on MCAS?
More and more people are, it seems. It’s a bastard of a condition, life-devastating and disabling in ways that are so often cruelly misunderstood, and lots of people are really desperate.
The excellent charity Mast Cell Action offers information and support and can send you a list of mast cell specialists in your area (if you’re in the UK). They also have a Facebook support group. They are a small young charity working hard to get proper recognition, treatment and research for MCAS, and they can’t do it without our help. So please consider making a donation at https://www.justgiving.com/mastcellaction.
On this blog there are posts which explain what things have helped me (And Finally… It’s Mast Cell Activation Syndrome, Getting Better: The Science Part (1), More about Food,) and also the guest post Another Girl Out Of the Dark.
Please read these before contacting me regarding MCAS/HIT. They pretty much contain all the information I can give about my experience – and sadly, with MCAS, given how individual our triggers are, what helps one person may make another person worse. Anything else useful that I find out I will post here. Always consult a properly qualified medical professional.
Good luck fellow masties, hang in there and all my good wishes. Anna
Useful Links for Light Sensitivity
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