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!