I’ve battled atopic dermatitis since early childhood. When I was growing up, I could get very little useful information and almost no adequate advice on the illness. I missed specialised events that would introduce me to the illness, brochures with quality advice and workshops tailored to the needs of child, adolescent and adult patients – workshops that would aid me in my battle. I missed everything that would have made my everyday struggle with atopic dermatitis easier. Meeting others with the same or similar diagnosis would tear through the moments of loneliness, and a supportive, accepting and understanding society would brighten my days of despair. In late teenage years, I was struck with the desire and the idea to establish an organisation dedicated to ameliorating the lives of patients suffering from atopic dermatitis. This desire remained with me for a very long time; I let it germinate and grow for nearly 15 years. It wasn’t easy for me to take the step and share my story with you. I’m not used to laying my life bear for others, but I feel that, in this case, telling my story is the right thing to do. I feel that others may find it helpful.
The first signs and symptoms of atopic dermatitis appeared on my body when I was barely a few months old. The changes appeared first in the bends of my knees and later, my arms. Even before reaching the age of one, I managed to scratch and bite the rashes on my skin every night until I drew blood. I cried, thrashed around in my bed and scratched myself incessantly, which not only kept me but also my entire family awake at night. When I was one and a half years old, the rash slowly began to spread to other parts of my body. Visits to dermatologists and paediatricians were a monthly occurrence. I was hospitalised each month so that the doctors could give me a new supply of skin-care, nightly corticosteroid and antibiotic ointments. After a few years of continuous medication use, the effects of the drugs began to wear off, bringing only temporary respite from the itch. The rashes returned quickly and more aggressively. During the worst flare-ups, I was give systemic corticosteroids the effects of which lasted for a few weeks. Antihistamines had no effect on the itch. The doctors couldn’t put me through a prick allergy test because my skin was constantly inflamed and damaged. Because they didn’t link atopic dermatitis with food allergies, I was given no diet to follow.
Ever since I was a little girl, I had a burning desire to understand what was happening to my body, why I became ill in the first place, and whether my suffering would ever end. Even at that time, my diagnosis of neurodermatitis seemed vague to me. Unknown causes, insufficient knowledge of the disease and the persistent claims that I was merely suffering from a “skin condition” although I also suffered from numerous allergies, breathing difficulties and inflammations drove me and my family into despair. My only solace came from the words of the doctor who comforted me that the illness will most likely disappear in puberty. The hope that my atopic dermatitis will finally remit and I would be allowed to live my life fully was what kept me going. By that point, I was not only struggling with the physical aspects of the disease but also with its psychosocial fallout. Even today, people stereotypically regard skin illnesses as contagious. Thirty years ago, this unfound fear of contagion was much more common and persistent. As a child, I was often teased and mocked by my peers and deprived of their company. Some parents also contributed to my isolation. Fearing that their children would catch my disease, they didn’t allow me to touch them, hold their hands or play with them. I was often left out from invitations to birthday parties. On the odd occasion when I was invited, I wasn’t allowed to eat snacks from the same bowl as others. Nobody remembered to set aside an extra bowl only for me.
I remember that my skin condition only abated during seaside holidays. Sea, sun and carefree playing in the sand became my respite, from the illness and from people.
The long awaited puberty didn’t bring the desired relief. My condition deteriorated profoundly. Rashes became open, gaping wounds that spread from the body to my neck and face. My skin was inflamed, raw, damp, thick and robust, red and grey, with dry, scally areas in between.
I was in the throes of a terrifying, unrelenting itch. Before going to bed at night, I would lock myself up in the bathroom and scratch my skin for hours. The itch became a part of me – I couldn’t escape it even in my dreams. This period lasted for so long that I forgot how it felt to live without an itchy, burning and painful skin. Sleep turned from suffering to agony. Usually, I could only fall asleep after 4 a.m. in the morning only to wake up a few hours later and start my day, without excuses. Topical corticosteroids were of little help to me, and I was mostly given injections and was also hospitalised. I welcomed the pain that accompanied the cracking up of my dry and inflamed skin, as it washed away the itch for a few blissful moments. The only things that remained were open, gaping and bleeding wounds. They were so extensive that my clothes would stick on them. I stopped doing sports and gave up dancing, which were sources of joy for me. My skin wouldn’t tolerate a drop of sweat. At the same time, I also became thoroughly acquainted with depression. I was a teenager with severely affected skin all over my body and face. During the period when beauty holds special significance for girls, I couldn’t look myself in the mirror. Children would point at me, the adults stared. While shopping, I was pestered by nosy strangers.
In time, my illness began to reveal its hidden sides. I was more and more frequently affected by allergies, breathing difficulties and various inflammations; I started to experience pain in the joints that moved from one to the other point in my body each day. Sometimes I couldn’t lift my arm, at other times it was my feet, knees or hips that I wouldn’t move. Medication was much more effective in treating my joint pain, but my health issues didn’t end here. Atopic dermatitis soon hit my bowls as well. It was then that I began examining my diet and revising my life style.
Despite the rocky and turbulent path that I was forced to take due to my illness, I tried to be positive about my experience and lead a “normal” life. It wasn’t easy, but I had no choice in the matter anyway. In my third year at the university, my condition worsened to the extent that my dermatologist strongly advised me to stop my studies. Before, I had never let my illness interfere with my life; I was stubborn and persistent. Yet at that point, for the first time in my life, I had no energy left to continue the fight. I followed my doctor’s advice with a heavy heart and took the break that I desperately needed.
I plummeted. Tired and exhausted, I wished for my senses to just go numb. I no longer wanted to feel my body and the emotions building up inside of me. I yearned for change, I wanted to find peace, but the intolerable itch persisted and demolished each and every single one of my hopes for a better future.
The itch in patients with atopic dermatitis is a seriously underestimated condition. If someone is in pain, we usually shower them with compassion and understanding. We know that a person with a damaged leg walks with difficulty or not at all. I never heard anyone address such an individual with “That’s enough! Stop limping around and start walking normally!” Scratching the skin during an atopic dermatitis flare up isn’t beneficial, but it’s unavoidable. My acquaintances and friends often told me to stop scratching. The warning was usually accompanied by unexplainable hits to my hand. The itch in people with atopic dermatitis isn’t comparable to the itch experienced by healthy people. It’s impossible to imagine its severity if one has never experienced it oneself. Scratching for me is never a matter of choice; it’s a consequence of my illness.
After years of living with atopic dermatitis, I slowly got to know my illness better. I learned to recognise most of the triggers that caused my body to overreact. I realised that it’s important to accept your chronic condition. It’s essential to raise the quality of your life and understand that the “problematic” body part can’t simply be removed so that you can go on with your life. The skin is our biggest organ, and the illnesses that affect it can’t be done away with instantly. We need to introduce changes, sometimes very drastic ones, into our daily routine. Unfortunately, no matter how extreme the change, it can only achieve so much. I used to be angry but now I’m sad to hear accusations such as: “You didn’t try out everything. You aren’t doing enough to cure yourself. You didn’t go for this or that alternative or complementary method. You’re not positive enough. You don’t want to get better strongly enough. It’s your fault, you keep refusing treatment. We got over atopic dermatitis in a year, try harder. You don’t use your cream often enough. You don’t use the right cream.”
I tried EVERYTHING that my family could afford in terms of time and money and that I myself can afford today. To put it somewhat bluntly, chronic illnesses don’t always go away with positive thinking and a gluten-free diet.
I had to learn to accept others’ limited views on chronic illnesses. I accepted their fear of the unusual and the unknown. I realised that people like forming opinions about things that they don’t know or understand and that I don’t have the power to change them in this respect. I accept their words with compassion and try not be hurt by them. I don’t have to prove myself to others, make up explanations for my illness or apologise for it. You can only understand a chronic condition once you lived with it.
My diagnosis of atopic dermatitis set me on a steep path to hard earned lessons and experiences in life. Although it might sound strange, I can say that I’m grateful for it. I accepted the illness as a part of my life, and I don’t allow it to define who I am. Each day, I learn new ways of living with it, listening to my body and accepting my difference from others. When I look at myself in the mirror, examining my imperfect skin, its rashes, wrinkles and scars, I’m proud that I’ve managed to pick myself up and go forward in spite of it all.
The illness has given me a voice that I can use to stand up for myself. It has brought me unimaginable strength and has made me realise that you can find the energy to continue with your life even after it has crumbled to ruins. I learned that life is much more than impeccable health. I had to give up many things due to my illness, but this only freed up space for others to come. In chasing the sun, I discovered my love for travelling, diving and the exotic. I became a much more compassionate and understanding individual. I can truly feel for people who have gone through pain, suffering, isolation, stigmatisation and depression because I’ve experienced it all myself. I’m accepting of the differences amongst us, I don’t stare or judge. I live and let live.
It’s now the third year since my illness has gone into remission for the first time. I can finally sleep and live a “normal” life. It’s a life that I never actually knew before. I’m aware that my atopic dermatitis will probably never go away and that my skin will never look pristine, without its itchy rashes and scars. The difference between now and the past is that I’m no longer fighting with my body but accept it with all its imperfections. My many experiences have trained me not to ignore its calls but listen to them carefully. I’m open to all suggestions and advice on how to improve my health, but I only accept those that I feel will benefit, not harm, my body.
I wouldn’t give up these experiences and knowledge for anything in the world.