I am a psoriasis sufferer who developed the disease at about 13 years old and am currently almost 26. I can say that I have been struggling with this disease for half of my life, and by the time I finish my birthday in two months, I can already say that I have been struggling with psoriasis for most of my life.
I have never told anyone in reality that I have this disease, except for my family and relatives who know about it. I just want people to see me as a normal person and not think “I’m different” just because they know I have the disease. I have such a concern because the public does not understand psoriasis, many people just Baidu pictures or listen to some one-sided words to make a preconceived conclusion about psoriasis and psoriasis patients, or say some words that you think you have no intention but will hurt the patient, just like depression is said by some people “is too fragile psychologically ” and so on.
And today, I finally gathered the courage to make up my mind to say this, not to whitewash anyone, but just to write about my own personal experience and feelings as a patient, so as to eliminate as much as possible the lack of understanding and even misunderstanding of psoriasis.
I hope you can look at psoriasis and psoriasis patients objectively without any preconceived notions, and do not discriminate. Psoriasis is not contagious, it is just an eyesore. Psoriasis patients are in great physical and mental torture, according to recent years psoriasis authoritative research institutions on the survival of psoriasis patients survey report shows that 90% of patients have mental pressure, nearly half of patients have suicidal tendencies, and even nearly 10% of patients have implemented suicidal behavior, we can also search online news of patients committing suicide; and two-thirds of patients affected work because of the disease, and even one-third of patients have lost their jobs because of the disease. Half of the patients said they had been discriminated against because of their disease.
The causes of psoriasis are complex and not yet clear, and there are environmental and genetic factors. Some people even develop psoriasis after just one fever or cold or a moment of stress. And now more and more people seem to be suffering from this disease, in my opinion, it’s like the “disease of affluence”.
The treatment of psoriasis is a big expense, currently known as the safest and effective treatment method should be biological agents, but it costs about five thousand yuan a shot, it seems to be at least a month a shot. In addition to other treatment methods, ordinary families simply can not afford.
Some years ago, the country’s research on psoriasis was not deep enough, small local hospitals simply do not have treatment experience, coupled with the proliferation of Putian hospitals, “charlatan” liars everywhere, resulting in many patients seeking medical help in an emergency, originally very light symptoms, the results of treatment into psoriasis patients with moderate to severe, it has become a lot of people Baidu feel The picture of “very disgusting”. According to my observation in a group of weibo friends, many middle-aged patients lose their jobs, their wives are separated, they are destitute, and they have to face the discriminatory and disgusting eyes of others all the time.
Although there is no cure for psoriasis, but in fact, psoriasis patients as long as they go to a regular hospital for treatment, follow the medical advice, the taboo mouth, to develop a normal regular work and rest, to maintain a good mood, it is best to exercise from time to time, the condition can generally be controlled well. And in recent years, the country is studying the inclusion of psoriasis drugs into medical insurance, I believe the survival environment of patients can be better and better.
The following is my personal experience, too long can not look.
I remember when I was in my first year of junior high school, I suddenly grew a red mass on my ankle the size of a nail cap with skin lesions. I was very sloppy at the time, and my parents were too busy to take care of me because of work, so I didn’t pay much attention to it. After that, my father took me to the Maternal and Child Health Center when I started to get such red patches on both legs. I remember very clearly that the doctor took one look at my legs and said directly: “We can’t see it here, we have to go to the provincial capital.” Then he sent us away. I listened and cried when I got out of the hospital. In fact, I did not understand what kind of disease I had, I just thought, even the doctor said “can not be cured”, then I must be suffering from a serious disease.
Because my father is an ordinary worker, my mother works odd jobs, they are usually very busy, plus the family was very poor, so they did not go to the provincial capital. The first thing you need to do is to get a new hospital, however, we are a small city of eighteen, I guess the hospital has little experience, do not know how to cure. The doctor prescribed me the kind of medicine that is more than ten pills at a time, two or three times a day, and told me to go to the hospital regularly to take ultraviolet light. Because my condition developed to the point that both arms and head also began to have. Then I was told to stop smoking and drinking, and not to eat “hair” things. The word “hair” is a colloquialism that refers to foods such as beef, lamb, and seafood.
I remember when I first came out of the hospital, my mother dragged me to a barber store next to cut my hair, in order to take UV light. I cried while cutting. When the young barber boy was halfway through the cut, he suddenly noticed something was wrong and fiddled with my hair with the clippers to look at my scalp, then revealed that slightly disgusted and surprised look. I cried so hard I couldn’t speak, but could only stare at him viciously.
When I went to school the next day, my classmates were amazed and asked why you cut your long hair. The girls of that age, in fact, are very beautiful, the class often discusses “who likes who”, the girls are basically long hair. And I could only laugh and say “I want to change my hair”.
This hospital method should not be effective. Then my parents should have taken me to several hospitals, and even took me to a “no” store next to the train station to see a doctor. The unreliable-looking shopkeeper took out a white ointment and a red powder, mixed them together to make a pink ointment, and told me to rub it on the affected area daily. I looked around the ramshackle store, the counter at the entrance was filled with “folk remedies” for “aphrodisiacs”. I intuitively didn’t want to use such nonsense, but I couldn’t resist my parents, who thought, “Why is this kid so disobedient and not treating his illness properly?
I was so afraid that my classmates would find out I was sick that I wore long pants and long sleeves to school during those hot summers. I remember one time, the school was going to hold some kind of event, and there were leaders from the city to visit, and there would also be media to cover the event, so the teacher asked us to wear school uniforms as a class. The summer uniform was a knee-length skirt, but I didn’t dare to show my calves. I had no choice but to wear long pants to school. The teacher criticized me severely, and I was very aggrieved, but I didn’t say anything.
What made it even harder for me was that I don’t know if it was because of puberty or wrong medication, but I started to gain weight. When I was the fattest in high school, I weighed over 130 pounds (I was 163cm). When I was a kid, I was dark and skinny like a bamboo pole, and my parents worried if I was too skinny, but now they started to fear that I was too fat. So, in terms of appearance alone, I was fat and dark, and had a short haircut that was not much longer than a man’s. I didn’t want to look at myself in the mirror every day. I don’t want to look at myself in the mirror every day. When I was a kid, my parents would take me to a photo studio every year for my birthday, and I never went back after I got sick.
Since then, my personality has changed dramatically. I was a very lively and cheerful child when I was young, with a big grin like a tomboy. After the illness, I watched myself turn from a living volcano into a pool of stagnant water. I became unpredictable, a little on the explosion; highly sensitive, extremely low self-esteem; silent and timid, negative anxiety.
After failing to find effective treatment in this small 18th-tier city, my parents took me to the provincial hospital. This time the doctor prescribed a bunch of Chinese herbs, which can be taken orally or in the bath. So I began to drink Chinese medicine every day, Chinese medicine bath soak the head of the day. The Chinese medicine is very bitter and bitter, each time I drink it I take a deep breath and then a mouthful into it. After a while, I felt that this treatment was not very effective, but I could only listen to what the doctor said to do. After a long time, I wanted to vomit when I smelled the Chinese medicine.
By this time, I was already in high school. In junior high school, I was in an ordinary middle school, and with the school’s “free-range” teaching, I learned very easily and my grades were outstanding. I even got into the key class of the city’s only two major high schools with the second highest score in the school.
However, the difficulty, pressure, and stress of high school work came out of nowhere, and I was caught off guard and couldn’t adapt. My parents didn’t have a good relationship either, and often fought. My mother, who thought she had given a lot to the family, told me many times, “If it weren’t for you, I would have divorced your father,” which led to her expectation of me: “You must study hard and be successful in the future, I’m counting on you in the future.” Coupled with the recurring torture of my illness, I was often on the verge of emotional breakdown. I often couldn’t sleep in the middle of the night, climbing up to the small window sill of my room, crying and looking at the sky, asking God “why me” and “why did you do this to me”, and then I thought of committing suicide again and again. At that time, my heart was full of hate, hate myself, hate my parents, hate the world.
I am an only child. My mother was nearly 30 years old and my father was in his 30s when they got married and then had me. I knew that if I took my life lightly, my parents would not only have their marriage collapse, but their lives would almost collapse as well. I couldn’t be so irresponsible as to leave them behind. Plus, under my mom’s indoctrination, I always felt sorry for them if I didn’t study hard.
So I went back to school the next day as a normal person and became an emotionless “problem solver”. However, even though I persevered, all of this affected my learning. I struggled to learn and was at the bottom of my class for two or three years. In the end, I barely made it to the bottom 211 in the college entrance exam.
In retrospect, fortunately, my high school classmates were quite good, even though I looked fat and ugly, I did not experience isolation and school violence, and I even gained a few sincere friendships. But even after knowing each other for ten years, I didn’t dare to tell them about my illness.
Because I was going to college, a relative in the provincial capital took me and my dad to the provincial dermatology hospital (or was it the provincial Chinese hospital? I don’t remember much), said it is necessary to cure the disease. The doctor seemed to have no good solution, so he pointed to a leaflet of medicine pressed under the glass on the table and said, “Why don’t you try this medicine, it was just recommended a few days ago.” So I started to use this medicine called carbotriol, and have been using it until now. I also gradually understand with my own experience of the condition, can not just treat blindly, so I refused to let my parents try various unreliable treatment methods again and again.
When the situation got better in college, this medicine was still effective. My condition remained in a cycle of relapse in winter and improvement in summer. The lesions on my body were gradually concentrated on my chest, back and thighs, with a few on my arms and scalp. So I could start wearing short sleeves and pants in summer, and occasionally a red patch or two would show up, but I could easily pass it off as a mosquito bite. In winter, even if the body recurrence, anyway, also by the layers of clothing wrapped invisible. But I’m a “cheap hand”, just like the nails next to the barbs or skin must be torn, when the lesions are serious, I often pick all the blood. There is also a little worried about the shower, but fortunately the dormitory floor of the public bathroom is a small cubicle, although the door is half open, but I try to hide in the inside of the wash, the fog is not too clear, and I do not know who knows me.
I have the best relationship with two roommates in college, but I am introverted and detached, and because of the fear of exposure, so when interacting with people will always keep a little distance, between girls that kind of intimate get along I can not do. So four years of living together, roommates also get along well under the premise of concealment. The only inconvenience is that when we eat together, I often struggle with this because I don’t eat too many things. When they ask why I don’t eat, I use allergies as an excuse. As time went by, they would occasionally tease me with this, such as “Let’s eat (beef) to show you”. I felt a little bad, but on second thought, it meant that they treated me like a normal person, which is exactly what I wanted.
The university gave me the time and space to think about what I should do. In the end, I made two decisions: first, since I couldn’t be irresponsible and lighthearted, I would wait for my parents to die before I killed myself; second, since this torturous disease has a certain genetic chance, I would never get married or have children in my life. Nearing graduation, I also began to grow back shoulder-length hair, and my weight was maintained at a BMI just shy of reaching the normal standard of overweight.
After that it was graduation, job hunting, and work. I was also nervous and depressed because of the twists and turns of job hunting and job hopping, which led to a serious illness at one point. But once everything was on track, I was able to control it better again.
After so many years of living with psoriasis, I thought that no one would like me because I was disgusted with myself. Plus, since I’ve made up my mind, I don’t ever initiate contact with boys. Even if you notice the approach of the boy, I will also be the first to say no and then cut off contact with him (I like to play games, there are games together with the boy expressed a good feeling, but I think if you have seen the real person he will not like me).
In the past two years, as my work and life gradually came to a normal track, it took me a long time to slowly reconcile with the world, with my parents, and with myself. I gradually accepted the fact that I would never be able to get rid of psoriasis in my life, and tried to be as friendly with it and as happy as I could be. Now, I just want to do a good job and earn some money so that I can travel and retire for my parents in the future; until my parents die and I have no more worries in the world, then I can choose a beautiful place to bury myself.
Until, I met my boyfriend. He made me go from thinking about suicide to thinking about how to spend my life with him.
We met in a local WeChat group. Last year in May, the two of us back and forth into the group, I found that he and I are peers, in the spirit of “meet peers to ask for experience” idea of a hello. If you’re a day late, this group will become a blocked message never to look at the ornament, I will not know him. He added my friend, casually chatted a couple of sentences, found that we actually study the same professional, and then casually said one day to meet for dinner to talk. However, after that I forgot about it, and we never chatted again. A month later he suddenly asked me a professional question, I just remembered this person. I found out that he was from Sichuan and had just come a long way to work here, so he was unfamiliar with the place and spent the Dragon Boat Festival alone in the house playing the piano. I felt sorry for him, and decided to call him out to play when I had the chance. After two more conversations, I asked him out.
I did not expect that we could talk so well. We met at three o’clock that day, and we went to a milk tea store for milk tea, dinner, a supermarket, a walk, a night market, during which we talked all the time, about profession, school, work, literature, history, military, current affairs, games, movies, music …… until eleven o’clock at night before we parted.
However, I was just thinking that I had met a friend that I could talk to, and didn’t think much of it. But he began to talk to me often, and asked me to hang out on weekends. After the third time we met and talked until midnight, I felt so ambiguous, so I asked him directly what he wanted. So, we just made our relationship clear.
In fact, at that time I struggled for a long time in my heart, I think I should, as usual, refuse and break off the relationship. But I couldn’t let go this time, I wanted to be in contact with him so badly. I was so caught up in thinking about it for three days that I even shed tears at work. Finally I made a very ashamed decision to talk to him about a relationship, so that I can feel the feeling of having a boyfriend, and then break up with him. Plus he was almost a year younger than me, and I learned that he was personally biased towards dinks, so I didn’t think it should matter much if I delayed him for a few weeks. So I gave myself an excuse to start dating him.
After only a week, however, my guilt swelled to the point where I was disgusted with myself and I felt I shouldn’t have cheated on him like that. So that night, while crying, I confessed to him: I’m sick and I’m breaking up with you.
He only asked me a few questions at the time: is it contagious, is it hereditary, and what effect does it have on your current health? After learning that my current condition was under control and that the symptoms were just red patches of skin lesions on my body, he said he wanted to continue to see the relationship, but if I made up my mind to break up, he would respect me.
I was stunned, I really didn’t expect him to accept it so lightly. Can I make up my mind to break up? Then of course I couldn’t let go. But I said I would give him a few days to check the Internet and think it over. However, the next day he told me to think about it, there is no problem.
So we have been dating until now.
He really changed me a lot. He would say that I had a nice smile and that he would make me smile a lot; he would tell me solemnly that I was good and that I deserved to be loved. He has made me confident and made me feel like I am attractive.
I’m grateful to have known him. Even though I’m still pessimistic about the longevity of this relationship, it made me so happy and taught me to “love myself”, and I think that’s enough.
In fact, I thought for a long time whether to tell my private medical condition, because as I said, I was afraid of people’s strange eyes; and posting this privacy on the Internet, I was also afraid of being attacked and net violence. After so many years of medical history, my mental capacity is also very poor, and I am now trying to have as much fun as possible every day so as not to affect my condition. Moreover, my family, work and life are now very ordinary and peaceful, I am content and I don’t want my peaceful life to be disrupted.
Therefore, if there is any impropriety, please lightly spray friends and neighbors.
I wish you all life as you wish.
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