Anna Lyndsey who is allergic to light. Pic: Supplied. Source: Supplied

Anna Lyndsey blames her computer. But the burning continues away from her desk, and then outside.

It takes some time to realise the improbable truth.

Anna is allergic to light. All light. Even the sun.

The woman allergic to light sounds like a particularly dark Grimms Fairy Tale. But it’s the brutal reality for Lyndsey, 43, whose new memoir, Girl in the Dark, chronicles her rare condition, called photosensitive seborrhoeic dermatitis, and her life trapped in a “box of darkness.”

To survive, Lyndsey has fashioned a refuge in her house in rural England with windows taped up in layers of foil to keep any light away from her skin.

Lyndsey (a pseudonym to protect her privacy) was working at the press office of the Department of Work and Pensions gearing up for the UK general election in 2005 when the burning sensation at her computer began.

She uses electric fans to deflect the heat but soon discovers florescent lights are just as excruciating. At one meeting, her face burns so intensely that she starts to sweat, grasping her head with her hands to try to quiet her screaming skin.

Her friends suggest getting away from the stress they believe is causing her pain. She takes a trip out of London to the countryside. The burning continues.

“Oh my God. It’s got to be the sunlight. It can’t be anything else,” she says to her boyfriend, Pete.

She takes a leave from work and avoids places with florescent lighting — which is almost everywhere, buses, trains, supermarkets, the doctor’s office. She covers herself in a straw hat and refashions a scarf as a mask. She jokes that she looks like Michael Jackson.

Doctors acknowledge something is deeply wrong but shuttle her from one expert to another. She is tested for auto-immune conditions, like lupus, and hosts of skin diseases from porphyria to xeroderma pigmentosum, but they all come back negative.

A year after that fateful day at her computer screen, she finds a specialist who offers an answer: She is suffering from light- and computer-exacerbated seborrhoeic dermatitis.

This “exceedingly rare” condition is a severe outgrowth of what’s colloquially called dandruff when on the scalp, explains Dr. Marie Leger, an assistant professor at the Ronald O. Perelman Department of Dermatology at NYU Langone Medical Center.

Those affected report itchy, patchy, burning skin when exposed to UVB and UVA lights. In even rarer cases, like that of Lyndsey’s, all light sources effect the skin. It takes only 30 seconds of exposure for a reaction.

Though its cause is not known, Leger says that the disease is believed to be caused by malfunctioning sebaceous glands and a fungal infection of the skin. Elderly men and young babies are most commonly affected by the condition.

A 2004 case study described three patients with the light-sensitive form of seborrhoeic dermatitis. One of the patients, a man in his 30s, made such “major lifestyle changes” and “covered his window in silver foil” (like Lyndsey would later do), that he was initially misdiagnosed with a psychiatric condition before he received the correct diagnosis.

Lyndsey is given the typical treatment: steroid cream (to reduce inflammation), beta blockers (to stem blood flow) and antifungal cream.

But her situation was about to get much worse.

Anna Lyndsey, who is allergic to light. Source: Supplied

Initially Lyndsey is so thrilled that her face is improving that she ignores a new puffiness in her legs and arms. On a train to London, while wearing a top that leaves her elbows exposed, she notices a “roughed-up sensation on my arm, as though someone is rubbing it with sandpaper.”

A few days later, out in the sun again, “Suddenly I feel strangely hot all over, and break into a clammy sweat. I stop and stand on the pavement, disconcerted. It is as if something inside me is trying to get through my skin, not just in one place, but everywhere. I turn and run for home.”

The tingling lasts through the night and then she goes cold.

She tries to concentrate on other matters. Lyndsey is engaged and planning her wedding.

But days later, while addressing her wedding invitations by a french window in her home, she feels the “prickle of burn on her skin.”

“I crumple over the table, my face pressed into my hands, and cry harder than I have ever cried, the spasms so intense that I twist from my chair and tumble to the floor, shrieking among the envelopes, streaking them with tears,” she writes. “It is as if I am being torn in two down my centre line; I have never experienced such an intense bifurcation of soul.”

She realises then that the disease did not go away. Worse than that, it had spread.

They cancel the wedding and focus on planning her dark house instead. A man arrives to install UV-filtering films on her windows. But it’s not enough. She begins to plaster her windows with layers of foil to keep out any stray photon of light.

She buys protective clothing, layering herself in long-sleeved, high-necked shirts and ankle-length skirts over leggings, even in the height of summer.

Her days and her nights bleed together. To pass the time, she listens to audio books (her only condition is no James Patterson) and plays word games in her head. To keep her blood moving, she marches in place and practices Pilates.

Once an audiophile, she can no longer bear the sound of music. “Music listened to in solitary darkness becomes devastating in its power,” she writes.

She waits for her boyfriend, who cooks dinner and joins her in her chambers to listen to their favourite radio programs. To make love, the two must go through “procedures.”

“First we must wait until nightfall. Then, before he comes into my black room, Pete switches off all the lights in the rest of the house, closes curtains, shuts doors, banishes any stray photons that might fall on naked flesh,” she writes.

But darkness is disorienting during the heat of love. One time they knocked their heads so hard they saw stars. Another time she punches him in the jaw by mistake. They’ve both fallen out of the bed.

Sometimes people visit. But many friends can’t deal with her new life. They pity her and ask her how she can survive this life. Suicide is often not far from her mind.

She tries to procure enough sleeping pills just in case she decides to pull the plug, but her doctor refuses her request. She comforts herself with the thought that in the “kitchen drawer lie knives and a sharpening tool. My plan would be to file the longest to exquisite sharpness, and then, like the ancient Romans, fall on my sword.”

Lyndsey tries all manners of alternative therapies, some of which border on snake oil. Acupuncture, chelation, energy healing, grounding, hypnotherapy, meditation and kinesiology — with no effect. Beta-carotene is believed to help mitigate light-sensitivity issues, so she takes 20 pills a day and her skin turns a light orange hue.

Lyndsey’s memoir. Source: Supplied

But some of her alternative healers are no more open minded than those in mainstream medicine.

During one session, a reiki healer asks her: “Your partner, I supposed he has to do a lot of caring for you.”

“Yes, he does,” Lyndsey says.

“I’m wondering whether, perhaps, somewhere in your mind, you’ve got the idea that ‘this relationship only works if I’m ill’?”

“I don’t think so. We generally had a much nicer time when I wasn’t.”

“Well, there’s always a benefit, isn’t there,” says the healer, “even when it’s really hard to see.”

“A benefit?”

“A benefit to having an illness. The deep reason why we keep having it,” the healer says.

Lyndsey has to hold herself back from smashing the healer in the face.

Respite comes in the form of remission. Some days she is less light sensitive than others. On those days, she ventures downstairs. And stays out longer and longer, even wandering outside at night, taking in the cool, fresh air.

During her first remission, she cooks dinner for the first time since her diagnosis — Chinese steamed fish. She joins her husband as he watches “The Apprentice” through a carefully positioned mirror that reflects the TV.

She visits to her garden at dusk and plants and digs. She has gained the “freedom of the dark garden.” With the help of her boyfriend, she sets up a night-time trip to a nearby park. They create a tentlike structure, christened the “puppy cage,” for her to travel in.

But the cruelty of a chronic illness is that you must always live in fear of its return. And return it does with a vengeance.

“The first days after a relapse are days of rage. I go over in my mind the minutiae of events that have led to my downfall, trying to pinpoint what I did wrong. I castigate myself for an overoptimistic idiot, an inattentive fool, a stupid blundering imbecile,” she writes.

Then comes the despair as she returns to her life of darkness and then finally acceptance.

During a long relapse in 2007, Lydnsey and Pete decide to move forward with their delayed wedding plans.

They consult sunset times and decide on a date. She buys a bluebell satin wedding dress but knows that wearing it alone is no longer an option. A dressmaker sews a well-lined fitted jacket over it, and she buys a thick wide-brimmed hat to cover her face.

Five weeks before the wedding, a relapse hits her hard. “I feel as though cheese graters are being slowly pulled across my body,” she writes. She hardly leaves her room but decides to move forward with the ceremony.

“In the end, adrenaline and absurdity get me through … I come to say my vows, suddenly overwhelmed by the realisation that we’ve made it this far,” she writes.

It seems like a happy ending to a dark fairytale — but in real life there are no clear-cut happily ever afters. With no cure in sight, Anna Lyndsey still lives most of her life in darkness.

In the end, she has little pity for herself:. “ ‘Why me?’ is the question of an idiot. The sensible person says simply, ‘Why not?’ ” she writes.

But, she adds, “Joy lurks in every mundane thing, just waiting to be found. Love is impervious to reason.”

This story originally appeared on the New York Post