What is the thing that helps YOU with your skin condition? Share your thoughts and home remedies with us in the comments!
When I was a newborn, I started having issues with my skin from the moment my mother gave me milk. I couldn’t drink milk, so my parents gave me soymilk instead. I cried a lot as a baby because my skin was torn open all the time.
My nanny would tell me she couldn’t bear to watch when she took me bathing because I would scream like someone tortured me. She must’ve had a hard time taking care of me, I love her with all my heart for every effort she has put to care for me and my skin.
I started going to school for the first time. I didn’t speak any Dutch yet, only Cantonese. I was never popular and was always the easy victim for bullies. A small, cute Asian girl… yes, let’s pick her. Even at that age, kids would tell me how my skin is rotten; that I look like a witch.
I never liked school and never had many friends. There was one sweet boy, that always asked me how my hands were doing from time to time. I’m still good buddies with him now, love you, Mickey 🙂 I couldn’t go to the swimming classes that were required (in The Netherlands it is really common for everyone to be able to swim). No fun for me. As a kid, it really sucked seeing everyone so hyped about a certain thing that you know you can’t be a part of.
Read more: Journey to Conquer Eczema
There were also these crazy summer days when everyone had to strip naked and the teacher would spray them with a fire hose outside the playground (who the fucks does that? It’s creepy and cringy, even if I look back at it now). I remember clearly telling my teacher that I couldn’t and that I felt really embarrassed.
She scolded me and said I shouldn’t be such a pussy. Against my will, I still went… but stayed out of the water for most of the time. All the kids were having fun while I was busy avoiding the water and covering my girl-parts.
When I was around 11 years old, my skin condition got so bad that I couldn’t go to school for 3 months. My body was wrapped in band-aids and every time I took a shower, it was hell. Since I had a lot of wounds, the band-aids stuck because of the pus on my skin and it hurt a lot to remove them when I had to take a shower.
Everything hurt with even the slightest of movements. I cried almost every day. When I returned to school, the girls would say to me that no guy would ever want to hold my hands, because they feel like sandpaper. I was devastated. I was finally cheered up a bit by the fact that I could go to school again…but the bullying never stopped.
My father cared a lot for me during that period. Together, we consistently went to many different hospitals in Holland. I was never scared of the doctor because all I wanted was just to be normal. They tested me with all kinds of different and creepy shit. One time, they even cut off a piece of my foot for further inspection.
Nothing came out of it. The only thing I still remember was the look on my mother’s face when I came out of the surgery room. She was really concerned but I didn’t feel anything. All the hospital visits made me kind of numb and in my mind, I just hoped they would find something despite never liking the doctor.
Read more: My Eczema Story
There are all kinds of eczema but my kind seems to only occur in 4% of all adults. (Maybe I AM a unicorn? Or rather, a snake). Since my skin condition is that rare, every time I go there, I feel like I’m being watched like a monkey. Five or six interns or doctors would surround me while I had to strip away my clothes. At that age, I was ashamed but I had no other choice. So, every time I obeyed and hoped it would be over soon.
One time, I had to do a crazy test again. The doctor had cut my skin with a small needle-like knife without any anesthesia. He made 10 cuts in total from my wrist to my arm. Kids at school thought I was emo and cut myself for attention.
As time went by, I changed from a happy lively girl into a downer. I never sang or danced anymore. I barely spoke to people and the only joy I found was in my computer games. The extroverted me had turned into a shut-off loner. I didn’t want to see or speak to anyone. Video games and my computer could take my mind off everything for a while. I started playing day and night, making many friends online.
My dad never stopped caring for me. He did a lot of research on his own, read books and went searching online for solutions. One of the things we tried was putting sesame oil on my skin. Even now, I’m still a bit traumatized by it. If I eat food and taste sesame oil, I get a weird feeling of abomination. I’m pretty sure it’s because I associate the smell with my disease.
We tried weird Chinese medicines. All kinds of pills, cremes, and herbs. The herbs were extremely acrid. The first few times were the worst. I nearly threw up. After several times, I got used to it and drank it like a champ. The Chinese doctor also gave me small packages of herbs that I had to bathe in. We also tried bathing in ice. I put ice cubes all over my body for months to see if the itching would reduce. It was painful, especially in the winter. Nothing could top the fish liver oil I had to swallow every day. With all my knowledge in different kinds of food, I can tell you, that is probably the most traumatizing food and the nastiest ever. Then, there were more hospital visits…but guess what: nothing ever fucking helps. Slowly, I tried not to give a fuck anymore and just wanted to live my life the way I wanted to live. I ate everything I wanted, did everything I wanted. It wasn’t easy and my skin didn’t allow me to. I had to stop that lifestyle. My skin quickly forced me to become an adult in the mind at a young age. My mother often tried to cheer me up by saying that it’d probably go away by itself. Probably around 16 years old. Every year when I got my birthday cake, I had the same wish: please, I want to get better, pleeeeaase.
When I finally hit the age of 16, I was really depressed. My mom told me that it would go away right? Why hadn’t it? I lived up to her words so much, that I brought myself to a very low point. I thought, maybe if I turn 18, it’ll eventually go away. With more patience, I waited. Still, nothing happened and the condition went from bad to bad +1.
Read more: My Life with Chronic Pain
The itches were so bad that I often couldn’t concentrate on class anymore. My grades went downhill and in the end, I had to switch to a school in another city.
I was more depressed. I thought I had disappointed my parents, which caused me guilt. At my new school, I had even fewer friends. The same group of girls always bullied me. They will say that I always scratch my vagina and laugh. I had eczema on my upper leg, so it was natural that I scratched there. I don’t know if they paid enough attention in biology class or not, but there is not where the vagina is, bitches.
I didn’t say anything for a year… until one day. I woke up and told myself that if today they decide to mess with me, I’ll hit the shit out of those girls. Too bad for them they did, so I had to keep my promise and smack them. I got suspended from school.
It was worth it.
After that time, they never said anything about me anymore. Girls always treated me like shit and were mean for no reason. Slowly, I came to the realization that boys were much nicer and easier, so I tended to hang out more with boys.
Aaand… Puberty… Fun times. I found myself uglier than a mud fence. Each and every day I was convinced that I was very ugly. I hated myself when I looked into the mirror. I called myself a monster.
Read more: I have a Rare Condition that Prevents me from Having a Normal Life
In summer, I always had to wear long socks and sleeves to hide my legs and feet. While I was jealous looking at how pretty other girls were. I often fantasized how amazing it would be to walk in a skirt and sandals without any ugly spot on my skin and just go swimming with friends.
I imagined how carefree it would be to just go outside without tights or worrying that someone would notice and make fun of me. I daydreamed way too often about these things that people take for granted. The crazy idea is that I’d really love to know how it feels to have normal skin; to touch with normal skin. It’s super fucking weird that I’ve never experienced that.
Of course, I did go to the beach, but no one knows how much of a struggle that is for me. The sand goes into my wounds and when I go into the water my skin would become so red that it looks burned. The sand would then stick to my wounds once my skin got wet and tada! New eczema spots and more pain and itches! Same for swimming pools. No way would I be able to go in there without greasing myself with 10 kilos of Vaseline. When I do go, I would tell myself to man up and just go with it. The poker face always helps.
Read more: My Psoriasis Makes me Feel like a Circus Freak
When I turned 19, I still wished for my eczema to go away. Another year. Another birthday cake and another useless wish. I’ve always wanted to be a hairstylist. I did good at the salon academy, but unfortunately, I had to quit after my first year because my hands were no longer presentable. I couldn’t wash my customer’s hair anymore.
So, I decided to do something that doesn’t require my hands. I got into accounting. Still, I was depressed and made a deal with my teacher to only attend exams. For almost 3 years straight, I’ve not gone to college and just play video games all day. I still didn’t have any friends. The only days I was at school were exams days and when I had to talk to the teacher. Surprisingly I passed everything with good marks.
I didn’t get bullied anymore because I stopped caring. My poker face is so strong that bullies don’t have fun making me their victim anymore. I finished my years at school and began getting involved with game development. I suddenly became really popular. I think it’s because I’m a female gamer and 95% of the university were guys.
They would call me a rare Pokémon or a unicorn. In my mind, I was accepted because I’m unlike everyone else there which makes me a fucking monster. I couldn’t get used to it and everytime someone called me pretty, I couldn’t believe it. Because I don’t. I believe if they really saw me. Me, in a pure state, they’d be disgusted. Everyone would. I had a relatively low-self esteem. I did fit in really well, but I was still a misfit because, again, I was different.
Read more: My Little Humans Give me the Strength
The guy I dated back then that didn’t help me either. He often said that it’s because I just paid too much attention to my disease and that’s why I suffer from it. You suffer from something if you are reminded of it every day through pain and itch right?!
His advice for me was to just use soap, perfume and everything that the doctor explicitly told me NOT to use; to just ignore it as if I don’t have it. The argument he gave was because it worked for him. He was a chef, so he got “work” eczema, which can go away quickly if you put some creme on it and let your workers do the dishes. That is a total different eczema than mine.
I guess trying to explain something to someone who is uneducated is really a waste of one’s time. This guy then abused me with his narcissistic, devilish soul and tormented me for years. He did his part well, picking someone with such a low self-esteem, such as myself. I was a very good victim to all of his tricks and manipulative bullshit. That psycho guy was really bad for my skin because I was invariably in stress.
Read more: Psoriasis and Love
To keep myself busy and to be independent I needed to work. I started working when I was 13. I’ve had part-time jobs that required washing dishes. I asked my colleagues nicely to see if they wanted to compromise. To see if they could wash so I could do something like throwing out the garbage or money counting but those bitches always looked at me as if I was making it up. Even when I showed them my hands they were skeptical and thought I was lazy or simply not willing to do it. I found out when my boss told me. They back-stabbed me. He told me because he took a liking to me. Big cringe.
Now, I am almost 30 and still struggling with my skin every day. I got realistic (or negative) and also dropped all the wishing on my birthday. I spoiled the wish now anyway by posting about it. I’ve lost all hopes in healing, but I’m willing to try one more thing: going on a hardcore diet and cutting off all sugar.
In order to live, I have to give up a part of my life because I do really love food. I never pay attention to what I eat, because not many things make me happy. Food does. I hardly take showers anymore. If I do, I never shower for more than 2 minutes. I really wouldn’t know how it feels to take a long warm shower without worrying about my skin falling off.
Read more: Loss of My Security Blanket
I can’t do dishes without gloves. I can’t prepare food or cut fruit without gloves. I can’t wash my hair without gloves. I can’t wear certain clothes. My face is so dry that when I apply foundation, I become a snake lady. You see pieces of skin falling off by itself. It is so frustrating because it takes me much longer to apply make-up. I’m just lazy, but still, want to be pretty at the same time. If I didn’t have eczema, I would probably go out without any make-up and still be pretty.
Yes, I also often wonder how I’d look with normal, healthy skin. That is my ultimate dream. By the way, those girls were wrong. Many guys were willing to hold my hands, HA!.
I can’t attend pool parties. I can’t touch the rain. I even thought of moving to another country because it rains a lot in Holland. Okay, I can, but it itches like a motherfucker. I can’t carry heavy weight, because my hands are so dry and thin, the moment I put pressure on it, it just breaks or becomes very dry. I can’t do pole dancing. I tried pole dancing for 5 months, but my hands slipped every time because I can’t get a good grip. I can’t do kickboxing. As soon as I hit something hard, I get bruises and wounds. I can’t play airsoft. I can’t really wear black, because I always leave a trail of myself behind. I’m like a walking snowy mountain.
Read more: My Journey to a Healthy Life
I’m not victimizing or pitying myself, I’m just telling you my REALITY. One funny thing is that my fingerprints are never accurate. They change faster than a boy’s heart. So, I can’t use verification logins on computers or phones. That is also the reason they think I am a fake whenever I enter a different country because my fingerprints don’t ever match. It was the first time I found out about this fingerprint thing and I was just as surprised as the security misters.
Does that mean I can kill people without them ever finding my prints? Nah. I’ll still leave my trails of skin behind. What I’m trying to say, I’m basically kind of disabled and people don’t take me fucking seriously? I feel that I’m being fucked over by the government as well because none of the natural products or the expensive gloves are covered by insurance. But hey, I probably have to buy those things for a lifetime, no?
Wait, I can’t apply any more coistoride cremes (highly concentrated cremes with strong hormones), because my skin has become thin as paper and you can see my veins run through it. It’s creepy and ugly at the same time and I wonder If I’ll still have skin left when I hit 80 or even when I hit 50. So, why the fuck don’t they just give me some sort of insurance coverage for all the expensive shit that I have to buy for my skin? I wouldn’t be buying them if I wasn’t sick, right?
Read more: Different Types of Depression
There are so many questions still unanswered. I wonder if I never got fat because I repeatedly made the same movements for the last 25 years… scratching scratching scratching. It’s infinite and it never ends. I’m so sick, tired and desperate at this moment in time that I’d it probably do anything to make it go away.
Stress makes it worse, but eczema gives me stress, so it’s an infinite loop and I really have no clue what to do next. Cryotherapy? Light therapy? Diet? Pills?
On another note, I’ll go to the hospital again soon to take part in major research which will likely take years. I can’t afford to give up now because if I do, that will mean I gave up completely on life.
People often ask if I’m used to it or not. No, of course not. Can you get used to pain? Itchiness? Yes, I accepted that as a part of me but it doesn’t mean that I am used to it. Not even after 25 years. I also want to be healthy, carefree and pretty. I want to look for other alternatives and maybe even travel abroad to find doctors who can cure this disease of mine. Therefore, I might need a lot of money.
I’M READY TO BATTLE AND THE PLUS SIDE: IT MADE ME STRONGER THAN EVER.
