'I'm Allergic To Sunlight And Have To Cover Up All My Windows'

Sonal Keay has to protect her skin from daylight to avoid a painful allergic reaction.
Sonal Keay
Sonal Keay
Sonal Keay

In My Story, readers share their unique, life-changing experiences. Today, we hear from Sonal Keay, 42, from the Cotswolds.

Can you imagine having an allergic reaction any time your body sees daylight? Well, that’s what happens to me.

I’ve had difficult skin since I was a baby and was hospitalised with really bad eczema from young. It was always a constant feature, so much so that I’d always use heavy steroids throughout my childhood. But it got dramatically worse when I went on holiday with my family.

When I was 14 we went to France and I experienced really bad painful sunburn for the first time, which was peculiar as I was the only one in my family who had this. We’re Indian and typically people of colour have a higher degree of protection against the sun.

Sonal Keay and a friend
Sonal Keay
Sonal Keay and a friend

It wasn’t just sunburn, though. All I remember was being in a huge amount of physical pain, but I was also quite shocked as I didn’t really know why this was happening.

Though I wasn’t out in harsh sunlight, I knew instinctively that I just didn’t want to be outside. So on some level, I knew it was linked to the sun rather than an allergic reaction to something I’d eaten.

When I was around 17, I went to Hong Kong as I won an opportunity to do work experience at HSBC. This was during the early days of the internet, we’re talking 1995, so it was only really used for academic purposes. The person I was staying with was one of the early adopters of the internet, and said: “Oh your condition sounds strange, why don’t I put it on an internet notice board?”

I couldn’t believe it. This dermatologist responded and she said I should go and see her. So I got back from Hong Kong and went to see her in Liverpool.

“It’s not just sunlight I’m allergic to, it’s daylight.”

She was a photo-biologist who also happened to be Indian. I stayed in Liverpool for a week with my mum, the photo-biologist and her team ran several tests and found that I had a very severe allergy to daylight.

At that time there were about a known handful of people like me who were from Indian origin that had my exact sort of pathology who suffered from the same thing.

It was strongly suspected that me taking very heavy steroid drugs for my eczema – couple with acne medication – had basically led to a change in my DNA, which led to this lifelong condition.

I was told there was no cure, just treatment, which obviously isn’t great, so I’ve just had to learn how to deal with this condition.

It means wearing sunscreen every single day, all the time. Wearing a hat, sunglasses, scarf around my neck when I’m near the sunlight. It’s not just sunlight I’m allergic to, it’s daylight, so we try to cover the windows or I always take blackout blinds with me when I’m staying at a friend’s house.

Sonal Keay
Sonal Keay
Sonal Keay

I can’t tolerate daylight when it’s reflected off snow and water because it effectively doubles, which means I’ll never be able to go skiing or camping, because I’ll be in direct sunlight. I can’t get fresh air or early sunlight on my face, I have to be careful when my kids hug me as if they touch my face and rub off my sunscreen it will hurt me.

And then there’s the issue of mental health. When I was first diagnosed with the allergy I was told I could get depression. In fact, I did have depression, because I just couldn’t cope with it. I just couldn’t get it and thought “why me?”

In 2001, German chancellor Helmut Kohl’s wife, Hannelore, took her own life, she also suffered from the disease. She’d effectively been a prisoner in her own home for months and she just couldn’t cope.

My condition is part of the reason why I’m self-employed. I was a criminal barrister previously, but now I have my own business which was born out of struggles from my allergy. When I’m in a lot of pain, my face swells up, I get blisters and my body feels so itchy. My allergy particularly worsened when I was pregnant with my eldest as I had a hormonal relapse.

The only thing that relived me was sleeping with silk. It’s an incredibly healing metallic material, so it actually speeds up the rate of healing in the skin. I created This Is Silk. We sell silk face masks, hair wraps, hairbands, eye masks and several others products. I wish I’d discovered silk sooner.

I don’t enjoy having my condition, but the one thing that’s helped me is that it feels like everything has kind of come around full circle. I’ve managed to cultivate some mental strength by mediating, for example, it helps when things get tough.

Having my condition is difficult and I have to take it day by day, but I just have to remind myself that everyone suffers with something, and I have to count my blessings.

Sonal was interviewed by Habiba Katsha and her answers were edited for length and clarity. To take part in HuffPost UK’s My Story series, email uklife@huffpost.com

Help and support:

  • Mind, open Monday to Friday, 9am-6pm on 0300 123 3393.
  • Samaritans offers a listening service which is open 24 hours a day, on 116 123 (UK and ROI - this number is FREE to call and will not appear on your phone bill).
  • CALM (the Campaign Against Living Miserably) offer a helpline open 5pm-midnight, 365 days a year, on 0800 58 58 58, and a webchat service.
  • The Mix is a free support service for people under 25. Call 0808 808 4994 or email help@themix.org.uk
  • Rethink Mental Illness offers practical help through its advice line which can be reached on 0808 801 0525 (Monday to Friday 10am-4pm). More info can be found on rethink.org.