At Institute Atopika we joined forces with the photographer Ines Krivec from Ines Image Studios in Rogaška Slatina and embarked on a project entitled “Beneath the Skin.” We invited kids and adults with atopic dermatitis to step in front of the camera and expose their vulnerable and heavily damaged skin. Atopic dermatitis patients are often targets of unwanted commentary and mockery due to the state of their skin—they are perceived as ugly, disgusting, contagious.
The project aims to pave the way for the understanding that an illness is never “ugly” or “disgusting.” It can be beautiful, too, and rouse feelings of compassion in us. Hopefully, the images will help raise awareness about atopic dermatitis in public and gradually reduce the stigma experienced by the patients. We would like you to meet the people who took part in our project and wanted to be introduced. Today it’s Veronika’s turn.
Veronika, why did you decide to take part in the project “Beneath the Skin”?
Well, I decided to participate at the spur of the moment really. I’m not a person who’d appear in photos much and I don’t know how to pose. I took on the challenge and I’ve had no regrets (when it was all over—laughs).
What are the things that urgently need to be improved for patients with atopic dermatitis and their loved ones?
Because the illness expresses itself in such diverse and complicated ways, it’s difficult to say what each and every patient would need. Greater transparency with drugs would definitely be useful—I’d like to see discussions on the harmful effects of medication and I’d like the patients’ views to be taken into account; for example, when they don’t agree with the prescriptions of certain creams. There are all kinds of treatment for this illness and it’s good to know what you’re getting yourself into. A lot of people regret their decisions later on.
The doctor-patient relationship should be built on respect. This is often not the case. It would also be helpful to raise awareness because people don’t know what we all go through unless they actually live with us. I think that we as patients with atopic dermatitis aren’t decisive enough and don’t know how to protect ourselves—you need a lot of courage to stand up for yourself and not please everyone or do everything at the cost of your own health. A solid, wide-spread knowledge about the illness would be very welcome. And also the possibility to take a sick leave when things get rough (it’s still up to the doctor’s goodwill to let you go on a sick leave sometimes).
What will certainly improve our situation is the arrival of new, successful medications and fresh knowledge about the illness. I believe that this is coming.
What would you say to your younger self if you had the chance?
I didn’t have skin problems as a child apart from occasional infections. But when the illness really started gaining momentum, I wish I’d known a lot of things that I know now. I’d let little Veronika know that she should take her illness seriously and not wait for it all to resolve itself on its own. I’d tell her to take really good care of her health; it should come before school, work and relationships. And that the illness won’t simply disappear without a certain amount of effort on her part. I would also have liked to see her speak about her illness.
Veronika, how did you gather the courage to pose for the photos?
I don’t really know. This is something new for me and not at all typical of what I usually do. I went for it and then wanted to get it done in spite of my fear and doubts.
Veronika, thank you. Thank you from the bottom of my heart.
