Institute Atopica opens a new chapter and introduces the following fresh story. I haven’t met Valentina until recently, when we worked together on her project dedicated to informing the public about atopic dermatitis. We soon bonded with each other through our experience with the illness that we both have in common. Yet our friendship isn’t built exclusively on atopic dermatitis and the understanding of the itch and the suffering, we share the same outlook on life and a love for people, animals, nature, travel… Valentina studies social work and is especially interested in support groups, which is why she is taking over Institute Atopica’s support group in Ljubljana. Through her own experience and in accordance with Institute Atopika’s mission, she will lead the group and provide its members with her warmth and the much needed understanding. Dear Valentina, thank you for your eagerness. Welcome to the institute. Alone we are strong, but together we are unbeatable!
The content of the author’s story remains unchanged though proofread. The story is about the personal experience of the author and doesn’t necessarily represent the Institute Atopika’s point of view.
Story of Valentina, our new colleague and a supporter of Institute Atopika
I first became ill with atopic dermatitis in childhood, when I was 3 years old. When I was growing up, the illness disappeared and reappeared in late puberty (at 17). Today, I’ve been dealing with it for the fifth year already. It’s a familiar story: different blood tests, self-funding check-ups, visits to innumerable dermatologists, thousands of euros gone down the drain in search of a miracle cream that would heal my skin, countless sleepless nights, bad mood, self-blame, comparison with normal girls of my age with perfect skin and feelings of worthlessness. These are the things that have been part and parcel of my live the past five years, since I’ve became ill with severe atopic dermatitis.
Hiding my hands, powdering my face and daily explanations about what’s going on with my skin were routine for me. Everything was about the illness. The first thing to come out of my parents’ mouths when I called them or came home was “How’s your skin?” All in good faith to heal the skin as soon as possible and live our lives peacefully again. Sadly, we somehow got used to the fact that my chronic illness had changed our daily lives and our functioning in a profound way. Each day I returned from secondary school downcast, with scratch marks and in a bad mood. I got nasty looks and reproaches such as “She’s in a bad mood again,” “I don’t know what’s wrong with her…”, but the only two things I ever wanted were: a) for my skin to stop itching and b) for people to let me scratch my skin because I couldn’t contain the urge any longer.
Every time I scratched, my parents would gently, and in good will, hit my hand and tell me to stop scratching. But I couldn’t do that. I wanted to take off my skin; I fantasied about ripping it off my body just so that the itching could stop. I wasn’t consistent when using corticosteroid creams because they did me more harm than good – my skin became itchier and redder, which is why I rejected corticosteroid treatment. Each time I went to see my doctor and he laid eyes upon my hands, he wrote me another referral. Thus repeated the circle of my illness: from my GP to a dermatologist, homeopath, bioresonance therapist, self-funding dermatologist and back again to my GP.
My mom would give everything to heal the scars on my skin, to heal her daughter’s scars, but she always ended up crushed and powerless. I, too, felt guilty for not using enough cream, for not taking enough care, for waking up on blood-stained sheets… At first, my atopic dermatitis was limited to my hands, but it then spread over my entire body and, what was the worst, crept over the skin on my face, which was always pristine beforehand. When my family noticed that atopic dermatitis had spread to my face, they became even more determined to do something about it. I felt like my whole world was crashing down on me, and I was left completely powerless.
All the people with whom I met for the first time looked at my skin and took a step back. They asked: “Oh dear, what have you got there?” I told them it’s atopic dermatitis. The next question was what is it and is it contagious. I had to repeat to them day in and day out: NO, IT’S NOT CONTAGIOUS; YES, I SAW THE DOCTOR FOR IT ALREADY; YES, I DO USE MY CREAMS; NO, THIS CREAM DIDN’T HELP ME EITHER.
Strangers are always bursting with advice on how I could heal my skin so that I could be “beautiful” again. Believe me, every time I had to explain and defend my condition in front of others, I hurt more and more and my itch became unbearable. Maybe I’ve neglected my itch in my writing so far. But let me tell you, it’s truly unbearable. It can’t be compared to a mosquito bite; it can’t be compared with anything at all. It’s so strong that I draw blood and experience pain from intense scratching every time.
I remember last winter when I began to work in a shop. I worked at the fruit stand, and the skin on my hands grew all scarred and bloody. Stress, sleepless nights and getting up at 5 in the morning brought about such a worsening of my condition that I had to be taken to an emergency ward one day because I had infected, bleeding wounds all over my hands and body. I had to quit work because my condition deteriorated profoundly. I started to think – what if I’ll never be able to work, what’ll happen if people at a job interview look at my hands and face and see my scars. Unfortunately today, good looks are increasingly gaining importance. I want to work with people. What if they’ll treat me differently when they see my skin? What if they won’t be able to focus on what I’m saying because they’ll be constantly thinking whether to ask me about what’s wrong with my skin or not?
In July 2018, with my skin scarred, reddened and scratched, I took off on a plane to Africa (The Gambia) where I volunteered as an English teacher for the children. The kids placed their hands on my wounds, looked at them and stroked them; not a single one amongst them, actually not a single person, asked me about my skin. They only watched and caressed it. That month when I was cut away from everything, when I was literary cut off from the rest of the world, I had time to reflect upon my life and found out that I’ve been neglecting my feelings, that I didn’t listen to myself, that I was constantly fighting my body. At the beginning of August, I flew back to Slovenia with perfectly “nice-looking” hands. I had no scratch marks on them at all. The reason for this wasn’t me going to Africa. It was me being able to listen to myself, to look upon my body as an entity with which I have to work in unison. I began to treasure each day that I woke up without having scratched myself; I was thankful for every time my skin got better and better. My body and my soul started to cooperate. I began to listen to my body and relieved myself of my feelings of anxiety, helplessness and discontent that were gnawing at me from the inside. Currently, we are relatively all right, my skin and I. The moment I’m stressed out and not in tune with myself, my body warns me about it, and I listen to it and calm down. I know that my atopic dermatitis won’t go away for good.
I know that my skin will never be perfect but I accept it the way it is. It’s mine and a part of me. As a social work student, I’m aware how important it is to have psychosocial support. It’s so much easier when you can tell somebody else how you feel, what you’ve been through and how the way your skin looks hinders you in life. Unfortunately, there isn’t a single instruction or recipe on how to help someone with atopic dermatitis, how to soothe the itch and make the skin better. However, there must always be support in these difficult moments. Each individual knows what’s best for him or her. What makes up a good support group is foremost help, socializing, the sharing of experience and trust.