(19. 9. 2019) “What Doesn’t Kill You, Makes You Stronger” by Anonymous
I found it hard to put my story on this blog because it’s a special story, full of pain and history and tears. Just the thought of having told it leaves me sweating with nervousness. It’s not easy… but I have to share this with you… so that you’ll understand. So that there won’t be so much judgement, stigmatisation, weird looks, razor-sharp comments. So that there will be more happy and healthy people and more love on this world that needs nothing more but – love.
How hard it is to be rejected by the society can only be understood by those who have actually experienced the exclusion themselves. It’s especially hard for children, who feel pushed away, unloved, “special” and not a part of something. They experience these feelings throughout the rest of their lives, be it in school with their peers or at family gatherings with other family members. It hurts to be left out, to not be a part of something; it hurts that you are cast out because you are “special”, that you are alone and lonely.
Anyone who ever experienced loneliness for whatever reason and at any point in their lives, who has been “informed” that you can’t always measure up to everyone’s expectations, knows that the feelings is particularly painful. Now, imagine a child going through the pain of being discriminated, unaccepted, lonely and cast out. When the child grows up with these feelings in tow, becoming a teenager and then an adult, the pain only multiplies. Children aren’t born with feelings of rejection, and when the unpleasant experience suddenly occurs, it cuts straight to their heart. And because, as a child, you don’t know how to process these feelings, the negativity stretches into adulthood.
Even before I set foot in primary school, “strange things” were happening to me, a small, playful and lively girl. Why “strange”? Because I didn’t understand them. I never saw those things happening to anyone else and I didn’t know how to explain them for myself. In time and due to the lack of knowledge and understanding, innocent commentaries about the strange things began flying out of my family members’ mouths. And although my family meant no harm, the comments started leaving painful marks in my memory.
What were the “strange” things that were happening to this little girl? Red, raised and abnormally itchy rashes began appearing first in the bends of my elbows and knees. The itch was so strong that I scratched at the rash until I drew blood. People who don’t have the rash themselves will probably never completely understand how itchy your skin can get. The nights, of course, were the worst. Sometimes I wouldn’t sleep at all and sometimes I would scratch in my sleep until I began to bleed. Then came the scoffing: “Look at you” and “What’s wrong with you?!” The society, too, found it hard to accept the changes and the peculiarities on my skin; people wouldn’t understand why I’m so “weird” and “nervous.”
The judgement of others made me stressed out, and it only grew more difficult to bear with each passing year… At the time, I didn’t have a clue what was going on with me and why – I was barely 7 years old!
The first visit to the doctor was in the “let’s-see-what’s-wrong-with-you” style. At first, I was only given some creams and told to stay away from cats and dogs. It was then that I understood why I liked to change clothes and wash my hands well after I played with the dogs at my family’s farm. The dogs’ smell on my clothes bothered me and I began to itch more than usual. I changed my clothes in spite of the commentary that I acted like a “princess”, who spent most of the time in her wardrobe. Nobody understood, least of all me.
One autumn, it was time for me to follow in my older sisters’ steps and start primary school. On the one hand, I was very proud of being old enough to go to school. I always liked to draw and write. On the other hand, however, I couldn’t shake off the growing fear of how others will react to the “brands” on the parts of my skin that I couldn’t hide from view and that set me apart from everyone else. I thought about what my classmates’ reactions will be like if even my family, neighbours, relatives, acquaintances and random strangers thought about the marks on my skin as “special.”
And this is why I didn’t feel comfortable around new people, my schoolmates, although they gradually came to accept my “difference” in their own way. When my illness was at its worst, due to also how I felt at school, my skin displayed marks of uncontrolled scratching, and I positively detested going to class, even though I adored the writing and the drawing part. Because of the misunderstanding of my illness, I felt myself slowly turning into “that strange outcast,” who has something going on with her and is so very different from all the others at the school.
“Look, your ears are going to fall off!”
“I hope I won’t catch this thing from you!”
“You’re so ugly!”
“Look at you. Did you even look at yourself in the mirror?”
“You’re full of scars!”
“Do you have scabies?”
It’s impossible to count the days and nights that I spent crying over such and similar remarks that cut right to my heart and caused me pain, all this because I was so very different from others, because I wasn’t accepted, because I was cast out from the society. There were countless days when I didn’t want to go to school because of what was waiting for me there. I know today that it was all due to misunderstanding, but is there nobody out there who would teach children how to accept those who are different from others, who are special? Can no one stop children from making fun out of such individuals, from trampling their self-esteem? How could my classmates have been so mean to me…
Years went by, and I simply had to endure it all. There were periods when I received plenty of comments and periods when comments were sparser, depending on the state of my skin. In autumn and winter, I could also hide my rashes better. When I was 10 or 11 years old, I was finally given a diagnosis for this “strange thing” of mine for the very first time. Atopic dermatitis. Erm… what? What was that?
Although this didn’t happen ages ago, as some may wrongly assume, the era of computers didn’t yet fully arrive. There were no browsers in which you could type the two magic words and get at least some information on what atopic dermatitis is and what’s been happening with you all these years. At first, I was told that I will have the illness for life, that it has a chronic course and that it may or may not disappear in puberty. Doctors explained to me that it’s a skin disease the symptoms of which involve dry and reddened skin, eczema and severe itchiness. I was instructed to take good care of my skin, to keep it moist, and I received skincare products, corticosteroid creams for when things “get really bad,” antihistamines against the itch, special baths… I was to avoid the common allergens like dog and cat hair and mittens. Armed with all this medication, I was certain that I would kick my illness in the ass if only I was going to stick to all the prescriptions like a good little girl.
In between, I was tested for allergens a couple of times. I religiously avoided every single allergen, especially food allergens, for which my tests came out positive. I didn’t want to wake up the devil while it slept. Pollen and mittens, however, were two things that I couldn’t really avoid completely at all times, no matter how hard I tried.
Of course, my illness periodically took turns for the worst during my primary and middle school, but I nonetheless had the feeling that my atopic dermatitis was under control and that I was slowly taking over and even beating the illness. My sense of victory persisted until the end of my middle school. The stress from matriculation exams, end-of-school prom and everything else took its toll on me and my condition deteriorated profoundly. The inflamed skin all over my body and the abnormal pain and itchiness landed me on several injections of Flosteron and Medrol because the usual therapy didn’t work. The comments returned: “What’s wrong with you that your skin is all red and inflamed?” Oh yes, the comments ate away at my confidence, even more so than before, and all those painful childhood feelings surfaced again. All of this hurt even more. How could I explain my illness to everyone over and over again when even I no longer understood what the hell was going on with me!
After the pleas of my allergist, I landed on immunotherapy, which was completely ineffective for me. In the end, it actually crashed my immune system and put me in a hospital.
During my part-time studies, I found out about bioresonance, which was supposed to work miracles. At a bioresonance session, I was diagnosed with more allergies to food and pollen and I stuck to the prescribed diets religiously. I completely changed my eating habits and avoided everything that could potentially cause a flare-up, but the changes on my skin persisted. Upon the advice of my bioresonance therapist, I stopped eating white flour and white flour products, white-flour pasta, white rice and sugar. I also avoided any new food that could potentially cause an allergic reaction in me. At the time, I didn’t know about red skin syndrome and the addiction to corticosteroid creams. The creams had been happily prescribed to me by my doctors, allergists and dermatologists for years; of course my skin could never calm down completely.
After all together 15 therapy sessions, I stopped with bioresonance treatment because I had lost my job and had no money to pay for the therapy that was not covered by my insurance. I still stuck to the prescribed diets for the most part. I was around 25 at the time.
Up until my 26th year, I managed to keep everything under control, but soon my personal life began running haywire. Lots and lots of big and very stressful things happened. Those who know me personally also know what I’ve been going through. Maybe I’ll write about it someday on my own blog but definitely not today. Today, I want to talk about this story, the story of my battle with my illness, a battle that I intend to win. Although I avoided all my allergens strictly, I was hospitalised at the dermatology ward a couple of times when my condition worsened considerably. The skin of my entire body became inflamed and painful. I was itchy, swelling and couldn’t sleep. On top of all this, I was struck with eczema herpicus. People who never had atopic dermatitis in their lives will find it hard to understand how mentally and physically exhausting the illness can be for you, how your skin itches and how painful it gets. Sometimes, you can’t move at all because of the pain… I won’t say another word about how many tears I shed during this period and about the curses that I shrieked to the sky, too much to be put even on this blog.
I had red skin syndrome due to corticosteroid cream addiction. I’ve had no knowledge of the syndrome some three years ago, and allergists, dermatologists and other health experts naturally didn’t warn me about it. Most doctors didn’t acknowledge the syndrome anyway. The first to take interest in it was Dr Marvin Rapaport, a dermatologist from California. The syndrome occurs after years-long (decades-long, in my case) use of corticosteroid lotions or due to their incorrect application. I belong to the first group as I’ve been prescribed corticosteroid creams since my childhood.
Red skin syndrome is hell such that you’ve never experienced before, not even with atopic dermatitis. There is a burning sensation from the inside of your muscles – straight from the bone! I’ll stop writing about this here as well… Maybe some other time because I’m only beginning to tackle my illness. But I’m determined not to give up and go down due to my illness and all of its complications, not after everything that I’ve been through already. I’m not saying it’s easy – it’s one heck of a struggle! But I can do it because I know that “what doesn’t kill me makes me stronger”, as Kelly Clarkson said. I don’t claim that I never lose hope, that I don’t cry or curse when I have to rebuild my self-confidence from scratch because of everything I’ve been through… Yet, I won’t give up – never! Because of the promise I made to myself and my angel – I won’t give up!
I don’t blame my parents or anyone else for what has happened to me. Everyone did their best in the face of the situation that they’ve been pushed into. If they knew better, they’d act differently. Everything happens for a reason, even my illness and the situation that I find myself in today. I know that my victory over my illness will eventually come as well. What doesn’t kill me makes me stronger.
Love each other and don’t judge so that you yourself may not be judged.
(2. 9. 2019) Tanja sent us a poem and an essay
DIFFERENT If you can’t be a strong-warming sun, then be a beam however tiny, and reach all the way down, bathing my days in wondrous fun.
If you can’t be the moon lighting the dark, glow like the fireflies, glimmering, dancing in front of my eyes, leading me safely ‘neath nocturnal skies.
If you can’t be a sweet smelling flower, locked in a garden, then be a grass tall-standing amidst our hurrying feet, growing and counting our scurrying beats.
If you can’t be a road, then be a path narrow and dusty but carrying us straight to the end and going right past it.
If you can’t be a river, be simply a drop of water or blood, a life-giving substance, an all-encompassing thing.
Be proud of whoever you are, in difference lie riches. Pick your shape and your size and just don’t you worry, you’ll always be right.
“Mommy, why was I born with this illness?” was the question that was put forward to me by my 3-year-old daughter. “You’ve got the illness, my flower, because you’re so strong that you can beat it,” I responded. She didn’t see the tears in my eyes because I turned away and distracted her with little bricks that we were putting together. I know, however, that she felt my distress, my restlessness and my helplessness. This is just how strongly we’re connected as a mother and a daughter. I feel something and she takes those feelings right in. I try not to show her how powerless I am when I watch her and can’t do anything for her. The scratching is a part of our everyday lives. There isn’t a moment when my child wouldn’t be scratching.
Today, my princess is almost six years old. From her third month onwards, we’ve been fighting her “different” skin. At first, we shut our eyes to the truth, convincing ourselves that the skin changes were due to heat, cold, certain foods, new detergents, dust, dirty table-ware, unwashed dishes… We were champion liars, telling ourselves that nothing was wrong with our daughter’s skin. After a year and a half, we could no longer run away from it – our daughter was diagnosed with atopic dermatitis. We persisted with different diets and always followed them to the letter but with little impact. Inflamed skin, itching, scratching, wounds, blood, hospitals, corticosteroids, Medrol injections, community health centres, hospitals again, baths, compresses, gloves, avoiding the sun. Herpes began to appear, not on the mouth but on the nose, chin and around the eyes. Other types of eczema started to appear on her skin and the list of her diagnoses increased. This is how we became one of the “different” people.
Our everyday life is unlike that of other families who’re not dealing with serious illnesses. Each morning, we apply the creams to the skin, which takes a good 15 minutes plus the wait for the skin to take in the cream. Then there is the taking of the drugs, syrups and pills. After our daughter is given the systemic drug Cyclosporine, we have to measure and take notes of her vital signs because the drug has many side effects. We don’t go to the kindergarten, as we were advised against it because our daughter is in danger of catching various infections there. We won’t be going to school this year as well. We had to postpone it for a year with the prospect of the illness calming down during the period. Social contacts with others are a rare treat for our princess, who should be with her peers much more often but now spends most of her mornings with her dad (who takes on the skincare routine) or her grandma. Afternoons bring about another cream therapy routine because our daughter’s skin gets so dry that it peels off like dandruff when she scratches.
Evenings are spent bathing, dousing with antiseptic soap and applying cream (again). If the wounds are more extensive, we also have to give her cold compresses and bind the wounded body parts. The day comes full circle with drug taking, vital signs measuring and dressing in special anti-allergy pyjamas, and we’re off to bed that is made with special linen. We scratch our daughter’s skin gently to put her to sleep. If left alone, she would scratch until falling asleep, and she could draw blood. This is our worst nightmare, and we only leave her bedroom after she is fast asleep and stops scratching. In spite of our efforts, the scratching often continues into the night. We’re always there for her, sleeping beside her, and offer her our hands that scratch more gently, not causing any wounds.
We have no pets (except for goldfish), no carpets, curtains, plush toys. We don’t go to shopping centres, hotels; we don’t travel. Our trips around Slovenia are short because we’re afraid to go anywhere where there aren’t doctors or hospitals around if the need for them arises. In between: scratching, scratching and even more scratching.
“When my skin will be all better, I’ll have three dogs, a horse and an entire zoo at home, won’t I, mummy?” I feel boundless, purest love for her. She knows and feels that I would do anything for her, would move mountains and climb the highest peaks, only for her. She knows and feels that I would take away her illness and put it on me if it were possible. I would take on thrice the illness she has to struggle with if only it would cure her. But because this illness is something one has to live with, I give her faith and hope daily that we’ll be able to persist despite atopic dermatitis and that we’ll beat it. We’ll make it together. I repeat this to myself every day, if not out loud then at least in thought. “Of course, my flower, we’ll have dogs, but we’ll have to think about the horse. You know how we are with space.”
“That’s fine, mommy. We’ll put the horse in our grandma’s garden.” She is quick to find solutions. Then she scratches her arms three times before joining her sister, who are jumping on the trampoline.
I watch her leave and I’m happy. In spite of everything, I’m one of the rare mothers on this world who have been entrusted with such a child. My girl needs special care that I’ll always provide to the best of my ability. I’ll make her feel loved and happy and teach her how to love others. She is my child, for all times. Different, but mine. She is perfect just the way she is. She pushes me to be more capable and emphatic and casts away the shadows of prejudice and fear.
(16. 7. 2019) We got our first drawing, jupi! Author is Filip, aged 5.