The Little Things

I’m Mehar, a 24-year-old Afghan Sikh from London. I work full-time in healthcare and am a patient advocate. I live with multiple chronic illnesses, which makes me want to support others in similar situations.

During my first year of University, I was diagnosed with photoaggravated atopic dermatitis (PAD), a skin condition that is triggered or made worse by ultraviolet light (sunlight). It meant I couldn’t join my friends when they went to the park or lay in the sun. My friends were very supportive, but I still felt sad about it. My diagnosis was a surprise, as I’d had eczema since I was 6 years old and never knew the sun could be a problem.

Not many people know about this condition and it can be very isolating. To help raise awareness of PAD, I joined a project with other patients where we shared our experiences and created expressive artwork about our condition and the impact it has on our lives. I met some wonderful people and the workshops felt like a safe space for us all to share how we felt living with PAD.

For me it’s the little things that no one really thinks about that make a big difference.

PAD stops me from doing ‘normal’ activities, and I have to meticulously plan day-to-day. Most people correlate the summer with happiness but for people with PAD it can be isolating. When I want to travel, I must consider the temperature in the country I want to visit and think about how long I would have to be exposed to the sun. I can’t go to the beach or have a picnic outside because it would end in a big painful flare all over my skin. Covering up before going outside, which we discussed during the workshop, is also not an option for me. I have a condition known as Postural Tachycardia Syndrome (PoTS) where I would faint if I overheated, and I overheat quite easily.

In the workshops, many of us shared the experience of having to give something that makes us happy.

For a few years now, I’ve lacked confidence in the way my hands and arms look. To make myself feel better, I started doing my nails regularly. It may seem so little and maybe even ridiculous, but those pieces of plastic made me happy. I felt confident. Interestingly, after noticing the skin around my nails becoming darker and flaking a little one day, I did some research and realised the UV light from the acrylics was triggering my PAD! This made me upset because nails were something I felt good about and now this is something I have to reconsider.

It is vital for people with PAD to have a voice so that others can relate and feel supported. Having a space to openly discuss how I feel, share my experiences and hear other’s experiences made me feel less alone in the world. What makes this easier is how welcoming everyone was and that it was a safe space where we could be open and raw about our experiences and opinions. Personally, I loved attending the workshops and encourage others to get involved and have their say!

This guest blog was written by Mehar as part of a new campaign created with people affected by PAD and researcher Kirsty Rutter to raise awareness of the condition.

Find out more about the experiences of people with PAD on social media by following us on Facebook and X. You can also read more about Kirsty’s research here.