Susan Sontag has written a very famous book called Metaphors of Illness. In this book she explores the metaphorization of illness. Or to put it another way, it is about how objective physical illness becomes a moral critique or even a political attitude.
What illness brings to the patient is not only the suffering of the disease, but also the prejudice of society against the patient. In many cases, the prejudice is much more unbearable than the disease itself.
Xiao Xi, 36 years old, psoriasis
My name is Xiao Xi, I am from Beijing and now live in Sydney, Australia, and I am 36 years old.
I found out that I had psoriasis in the summer when I was 9 years old. The cause was simple. I fell that summer and strangely enough, the wound never healed. Then one day, out of the blue, I found myself with a red rash all over my body. At first it was just a little bit, but later, the rash became a patch, and then a patch became a bigger patch.
The situation became too serious to ignore, so my parents took me to the doctor. The doctor said this is called psoriasis, also known as psoriasis (the reason it is called psoriasis is because a layer of white scales can be peeled off from the skin area where it develops).
The disease came on me inexplicably; I just fell and suddenly my immune system decided to attack me. To this day, there is no clear explanation for the cause of this disease.
I was only 9 years old at the time and didn’t particularly care, I just thought it was gross and didn’t understand how it would affect my life. Before school started, I told my best friend that I had fallen and gotten psoriasis. I told her alone, not realizing that she reported it to the school.
As a result, the first day of school after the summer break, the whole world changed.
I remember especially well the moment I walked into the classroom, all the students were like seeing a ghost and stayed away from me. I walked to my seat and sat down, and those students around me immediately pulled their desks and chairs away. After school, some students hit me with small stones on the road, and others grabbed my school bag and little yellow hat and threw them around. There was a lot of exclusion and bullying like this.
The teachers wouldn’t let me come to school, and the school even contacted my parents, asking for a doctor’s certificate saying that my disease was not contagious, or else I wouldn’t be allowed to come to school. It was the 1990s, and the disease was not well known at that time.
At that time, I had to suffer in silence from the injustice I was experiencing at school. My school was a very good elementary school and I couldn’t expect to ask for help when the school was doing this to me.
My parents were very traditional parents who respected the teachers and the school and felt that whatever the teachers said was right, so they would not argue or disagree with them.
At school, I couldn’t help but feel inferior. I didn’t do anything wrong, but I had to do it with my tail between my legs.
It was hard for me to make it to the end of elementary school and to go to middle school. I can finally go to a place where no one knows my psoriasis history and start over. Occasionally a junior high school classmate asks what the psoriasis on my arms or hands is all about, I will say it is a seafood allergy, with one lie followed by another, to put the matter off.
I didn’t mean to lie, but my experience in elementary school told me that if I told people the truth, then the world would be against me. So I had to wrap myself up tight and not tell anyone that I had this disease. At the same time, inwardly, I vaguely expect that this disease will be cured sooner.
-2-
The process of seeking medical treatment, I have been to the regular hospital, no use, so in order to cure, I also tried some particularly strange ways.
One is called sleep therapy, early in the morning, my mother and I rushed to the military hospital, the doctor will give me a pill, once the medicine, I will immediately pass out. When I woke up, it was already nighttime, and I felt so groggy that I even needed my mom to drag me out of the hospital. I don’t know how this treatment works, but every week I run over and fall asleep, and I sleep all day, and that’s all it takes.
There is also a method that says there is a mushroom of unknown origin, after eating it can cure the disease. I don’t know where my mother heard it from, she believed it, all the way to the train to the bus and then to the tricycle, the wind and dust to a very remote place, with a high price to buy a bag of this mushroom back. Later, because this mushroom is too difficult to eat, I did not eat, was my mother ate alone.
There is also an electric shock therapy. My dad got an apparatus from somewhere, one end of the apparatus is electrified, and the other section has a round connector that can be used to make electric flowers. The treatment requires the round connector pressed on the psoriasis above, I was crackled with a series of electric shocks. Of course, this treatment didn’t work either.
I tried all kinds of weird and wonderful prescriptions, and in the process I even felt that I suffered far more from the treatment than from the psoriasis itself.
-3 –
When I was 17, I left Beijing and went to high school in New Zealand. One of the reasons why I chose to leave was because of my poor grades, and another very important reason was that my mother felt that I would not be able to find a boy in China who would accept me in marriage.
She thought that my slightly dark complexion and skin disease did not match the Chinese aesthetic preference for women to be white and beautiful; plus, influenced by the foreign TV shows and movies I had watched, my mom thought that a foreigner might accept me and I could marry a foreigner. But I don’t like foreigners. My mom said so at that time, which made me suffer a lot.
When I first went to New Zealand, I was so happy, it was like starting over again. But after a while, the “familiar smell” came back. In gym class, my classmates wouldn’t line up with me, and they pushed me around and bullied me.
One time, I was lucky enough to have a transfer student in my grade. I didn’t expect her to stand up for me in her first PE class. She was very angry and said to those people, “Stop it,” and then pulled me next to her and said, “You stand with me. She said, “You stand with me”.
I looked at her and thought that this person was an angel. Because I had always been treated this way by others, even when I was pushed around, I didn’t react at all and would think it was reasonable for people to treat me this way. In my mind, the idea of resistance never came to me like it did to her.
-4-
Later, I graduated from high school in New Zealand and came to Australia for school and work. And one experience in Australia helped me to open up my once tightly wrapped self.
That day I went to work normally, wearing short sleeves, with a little less serious psoriasis on my arm. It so happened that a colleague passed by, and suddenly he “ehhh”, I was very nervous inside, how to do, he saw my arm, I was found.
The actual fact is that you can find a lot of people who are not able to get a good deal on this. He took my arm, squeezed out a little papaya cream on my psoriasis, and rubbed it on me very carefully. He said, “You are a little dry, apply a little can moisturize. “
I was standing there as if I had been struck by lightning. It was unbelievable that a man would be willing to touch my psoriasis with his hand when even my parents had not been so open about it being a touchable thing. I froze, and he said, “You can try using it, it’s sold inside the supermarket”, and walked away.
That tiny gesture of his became a turning point in my life, and from that day on, I found it surprising that this thing was acceptable to others. Now that I think about it, I’m really grateful to him, even though I never got to say the words to him.
Later, when people asked me what was wrong with my arm, I tried to stop lying and just tell them that it was psoriasis. And I found out that many people in Australia have psoriasis, and when they learned that I had it, they would come forward to talk to me about their experiences in treating it. Admitting that I had psoriasis turned out to be a way to quickly draw closer to others.
Gradually, I no longer keep my psoriasis a secret. Sometimes, I would flip back and confess again with my close friends at home, I have psoriasis this disease, just then concealed not and they said. They listened, and they didn’t say anything.
-5 –
One of the reasons I left the country back then was because my mom felt sure I wouldn’t be able to find a Chinese guy who could accept me. This statement was engraved in my head like a plaque and made me very sad and inferior for a while.
But in fact, when I was 23 years old, I met a Chinese boy I liked when I was working in a hotel in Australia, but I initially rejected his confession because I was worried that he would mind my skin condition. However, to my surprise, he said he didn’t care at all after learning the truth, and we have been married for several years now.
Looking back now, I think that psoriasis is likely to bring with it a lifetime of physical pain, but it is more important to accept it psychologically than to find ways to treat it.
First, I would say to parents that when they encounter their children with the disease, they need to be strong inside first. My parents, who always expected this thing to be terrible and simply had no way to face it correctly, as if they thought the world was going to collapse and were worried that I wouldn’t be able to get married or find a job in the future, would also keep passing this anxiety on to me.
If they could have looked at the disease correctly at that time and helped me build up positively mentally, the only pain I would have had to endure would probably have been the disease itself, which I think I would have been able to bear with my personality.
I have read a book called “Survival of the Sick”, in which it is said that human genes are not perfect when replicated, there will always be defects of one kind or another, but sometimes it is these genes carrying defects, in some special moments of mankind and before the great catastrophe, for the continuation of mankind to bring a turnaround.
The book mentions psoriasis and says that people with psoriasis are indeed different from normal people in some segment of their genes. So, although I am the one who has the disease, I feel a lot more balanced when I think that maybe the psoriasis gene will help perpetuate the human race in some way.
My birthday wish every year when I was a kid was to be cured of this disease, but now I don’t care anymore. I can finally leave my birthday wish to “world peace”, how nice!
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