Hi there:
I hope everyone is physically and mentally healthy.
This story is quite self-explanatory, so I'll let it speak for itself. The source material is a podcast first aired by Story FM on Jan. 15.
Take care and see you soon.
—ML
Living with a Rare Illness: I'm Terrified People Think I'm a Freak
Transcribed by Li Shimeng, Zhang Shiyi and Zhu Siwei
Xiao Xi’s summer survival kit for psoriasis. Courtesy Story FM.
Xiao Xi, 36, psoriasis
1.
My name is Xiao Xi. I'm a native of Beijing who now lives in Sydney, Australia. I'm 36.
I was diagnosed with psoriasis the summer after I turned 9. The trigger was straightforward. I took a fall that summer and the wound never healed. One day I realized I was covered with red spots. Initially, they were sporadic, but the spots connected into rashes and then the rashes into large rashes.
My condition gradually got so severe it was impossible to ignore. Mom and Dad took me to see the doctor. The doctor said it was psoriasis, also known as "silver flake disease" in Chinese. (That's because white flakes fall off affected areas of the skin.)
The disease seemed to come out of nowhere. All I did was stumble and suddenly my immune system decided to attack me. To this day the exact cause of psoriasis is unclear.
I was only 9 at the time, so I didn't really care. I just thought it was gross. I had no idea the extent to which the disease would impact my life. Before school started, I told my best friend that I took a fall and came down with psoriasis. I only told her. Little did I expect her to report my disease to our school.
As it turns out, my entire world shifted on the first day of school.
I still remember vividly how my classmates dashed away the moment I set foot in the classroom, as if they had seen a ghost. When I approached my desk, my neighbors instantly pulled away their desks and chairs. In less than a second, with a loud swoosh, my immediate vicinity was vacated. After school, my classmates tossed pebbles at me on the way home. My backpack and yellow cap were snatched and tossed around. There were plenty of other types of intimidation and bullying.
My teachers ended up banning me from school. School officials got in touch with my parents asking them to produce a doctor's note that my psoriasis wasn't contagious as a condition for lifting the ban. This was the 1990s, before psoriasis had entered the limelight.
Back then all I could do was stomach the discrimination in silence. The school I attended was a prestigious primary school. With school officials behaving the way they did, I couldn't count on the support of my teachers.
Also, my parents are very traditional parents, respectful of authority. They deferred to my teachers on every single issue, uninclined to argue with them or raise the smallest objection. So my parents couldn't help me either.
Inevitably, I developed low self-esteem at school. I didn't do anything wrong, but I had to keep a low profile.
Somehow I survived primary school and moved onto junior high. I could finally start afresh at a place where no one knew about my history of psoriasis. On the odd occasion my junior high classmates would ask me about the rashes on my arms and hands, I would say it was a seafood allergy. I used one lie to cover another so I could get by.
It's not that I set out to lie. It's just that my primary school experience taught me that if I told the truth, the entire world would conspire against me. That's why I hid in my shell and kept my condition a secret. At the same time, deep down I prayed my body would heal soon.
2.
In the process of seeking a cure, I sought out regular hospitals, to no avail, so I also tried some rather alternative remedies.
One was sleep therapy. I'd wake up bright and early and rush to the military hospital that was offering the treatment with my mom. The doctor would feed me a pill that knocked me out instantly. By the time I woke up it was evening. I felt extremely drowsy and had to use my mom as a human crutch. I never figured out the logic behind the treatment. All I knew was I'd head over to the hospital once a week and crash for a full day. That was all the treatment entailed.
Another treatment involved a type of mushroom of unknown origin. Supposedly it was a total cure. I have no idea where my mom heard about it. In any event, she bought the story and took a convoluted journey by train, bus and tricycle to a remote town, where she splurged on a bag of these mushrooms. I ended up passing on them because they tasted horrible. My mom ate all of them.
I also tried a form of electric shock therapy. Somehow my dad got his hands on a device that connected to a power supply on one end and a round gadget on the other. Sparks flew from the round implement. You were supposed to press the round part on areas of the skin affected by psoriasis. I was zapped by a loud bolt of electricity each time. Of course that treatment never got me anywhere either.
All in all, I tried all sorts of weird treatments, to the extent that I think the agony of the treatments exceeded the pain of the psoriasis itself.
3.
At age 17, I left Beijing to attend high school in New Zealand. The reasoning behind the move was twofold. First, my grades weren't great. Another major factor is my mom didn't think I could land a Chinese husband.
She felt that my tan skin and psoriasis didn't fit mainstream Chinese standards of female beauty that prefer paleness, plus she was influenced by the western TV shows she watched. My mom thought a foreign man was more likely to accept me, that I could marry a foreigner. But I had no interest in foreign men, so my mom's thinking dealt me a major blow.
My early days in New Zealand were great because it amounted to a fresh start. But soon the familiar treatment resumed. My classmates avoided lining up with me in PE class and bullied me by shoving me around.
Luckily, a transfer student in our grade came to the rescue. She unexpectedly stood up for me in PE class. She fumed to my bullies: "Cut it out!" Then she dragged me to her side and said: "Come stand with me."
I stared at her, thinking that she was an absolute angel. Because I had been treated that way all along, I was numb to being pushed around. In my mind that was reasonable. Never did it occur to me to resist.
4.
Later on I graduated from secondary school in New Zealand and moved to Australia to continue my studies and to work. A single encounter in Australia helped me come out of my shell.
I was at work that day. I was wearing short sleeves and happened to have a minor rash on my arm. A colleague passed by and exclaimed. I was very nervous. What to do? He saw my arm. I've been busted.
Unexpectedly, my colleague turned around and returned after a while with a tube of Australian papaw ointment. He grabbed my arm, squeezed some cream out of the tube and applied it to my rash. He rubbed the rash carefully. He said: "Your skin is a bit dry here. This will help keep it moist."
I froze, as if struck my lightning. This was unreal—someone was actually willing to use his hand to touch an area of my skin affected by psoriasis. Even my parents weren't carefree enough to do so. I went blank. My colleague said: "You can give the ointment a try. You can find it at any supermarket." Then he left.
That small gesture became a turning point in my life. On that day it dawned on me that psoriasis was something that could be tolerated by others. Looking back, I feel genuinely grateful to my colleague, even though I've never been able to tell him.
From that point onward, when people asked me about the rashes on my arm, I tried not to lie. I told them flat-out that it was psoriasis. Soon I realized that psoriasis is quite common in Australia. When I ran into fellow patients, they would offer their know-how from dealing with the disease. Being open about my psoriasis actually became a way to quickly break the ice with a stranger.
Gradually, I stopped living in trepidation of psoriasis. Sometimes I would even track down good friends from China and tell them the truth. I'd say I always had psoriasis but concealed it at the time. When they found out, they didn't overreact.
5.
One of the reasons I left China is because my mom didn't think I could meet a Chinese man who would accept my psoriasis. The comment became engraved in my brain, leading to extreme sadness and low self-esteem.
The fact is, the year I turned 23, I met a Chinese man I fancied when I was working at a hotel in Australia. But because I worried that he would frown on my psoriasis, I rebuffed his initial courtship. What I didn't expect is that he didn't mind at all when I told him the truth. We've been married for several years now.
In retrospect, as much as psoriasis might bring a lifetime of physical pain, the most important thing is to be at peace with it—as opposed to trying hard to cure it.
What I want to tell parents is that if their kids have a difficult illness, first they must be mentally strong. My parents always planned for the worst-case scenario. They were incapable of confronting the issue front-on. They felt the world had collapsed and were worried I wouldn't be able to marry or find a job. They constantly passed on that kind of anxiety to me.
If they could have viewed psoriasis with the right perspective and supported me emotionally, then the only suffering I would have borne was the physical presence of the disease alone. Given my personality, I think I would have coped fine.
I read a book called Survival of the Sickest recently. The author argues that while the human gene never replicates perfectly and flaws are bound to surface, it is precisely these imperfect genes that are critical to the survival of the human race during important junctures and major catastrophes.
The book mentions psoriasis and says that the genetic makeup of psoriasis patients is slightly different than that of an average person. So, even though I am sick, when I consider the fact that the gene that causes psoriasis may help mankind survive in certain circumstances, I feel much better.
My usual birthday wish when I was a kid was I would recover from psoriasis, but now I don't care. I can finally reserve my birthday gift for world peace. How great is that?
Xiao Wu, hypospadias
1.
My name is Xiao Wu. I was born with a congenital condition called hypospadias. It is only found in newborn baby boys.
What the condition basically entails is the malformation of the external male sex organ. In a normal male, the opening of the urethra is located at the top of the penis. Mine is at the bottom. The effect is that I can't piss standing. When I do I piss my pants.
The biggest cost of this condition is psychological instead of physical.
My parents were very sensitive. They avoided letting me go to the bathroom with others since I was a kid. In primary school, I was caught stooping over the toilet opening on one or two occasions, which prompted questions. I didn't think it was a big deal at the time, even saying: "I'm different from you guys." It seemed to be a ploy to draw attention. I ended up confiding my condition to a few close friends, then word spread.
Eventually both my male and female classmates made fun of me, coming up with all sorts of nicknames. They accused me of not being a man. "If you're a man, then take off your pants," they would say.
Everyone started distancing from me, as if I had an infectious disease.
Before my condition was made public, I was positive, smart and a good student. After the fact, I felt I became a different person. The more I wanted friends, the fewer I got, so I resorted to using gimmicks to draw attention. For example, I would splash puddles toward female classmates on rainy days. I made weird noises in class and made a fool of myself—anything that earned a cheap laugh. The trend persisted until junior high. It felt very painful.
That's why I genuinely need to thank my parents and a few people I later befriended. They gave me real affection. I also need to thank one of my teachers who said something very moving when I was accepted by no one. Once I turned in my homework late and had to deliver it straight to the faculty office. On my arrival, my teacher deliberately announced: "This is my star pupil." The fact is I was a horrible math student at the time. I didn't even want to go to school because it was so painful. That teacher gave me the courage to stay in school. If it weren't for these people, I would have given up on myself a long time ago.
2.
Back to my condition. Hypospadias is not extremely rare—it is detected in one in every 200 baby boys. The recovery rate is high for newborns. Most patients recover after surgery. But when I was born, local hospitals in my hometown weren't that medically advanced. As a result, I ended up having to undergo several surgeries.
I had surgery when I was born, but the surgeon was inexperienced and removed what he considered excess material. A doctor I met down the road said the part removed could actually be used to construct a healthy urethra.
When I was 10 I had another operation. It was successful, but issues arose in post-op recovery. I had to piss often, but that made it hard to keep the surgical wound dry and sterile, which was crucial to healing. Eventually another opening emerged at the bottom of my penis.
About a year later I finally fixed the problem by being operated on by the top surgeon in the country for that specific procedure at the time.
After the surgery, I thought I could reclaim the right to use a urinal like a normal man. Yet it turns out I couldn't. The mental block was too big. It was impossible for me to piss when others were around. When I stood before the urinal, not so much as a drop discharged.
Also, I have to admit my private part looks a bit short. My parents had even asked the surgeon about possible lengthening after my final operation. Eventually we passed because I was too young at the time.
Even though my condition has been fixed, it still makes for an emotional wound, a secret I can't come to terms with.
In university, there were several occasions when I had the chance to become more physically intimate with my girlfriend. Yet I always bolted at the last minute, leaving my girlfriend dumbfounded. I don't have a girlfriend right now, but I like to lie that I do or shrug off introductions. I have no desire right now, nor do I want to be in a relationship. I just think I'm incapable of supplying the qualities a woman needs.
I do wonder about the day I do get married. What should when my wife finds out about my mental block—or to put it bluntly, my impotence?
Mushroom, 25, seborrhoea
A blurred portrait of Mushroom shortly after she shaved her head when she graduated from high school. Courtesy Story FM.
1.
My nickname is Mushroom. I'm 25 years old. I've been suffering from seborrhoea for about a dozen years now.
In junior high, white spots surfaced by the roots of my hair. At first I thought it was dandruff, but when the white matter fell off each piece would come with one or two strands of hair. Only later did I learn my hair follicles had contracted into tiny balls.
I was terrified. I would wrap the hair that fell off in paper napkins and stick them in my drawer. That didn't help, but it created a mild sense of security.
2.
At that point I had just started losing hair, so it wasn't very obvious. When I mentioned the hair loss to classmates, they would say: "Oh, I have the same problem. I have hair issues too."
I thought they had no idea what I was going through.
I'd bring up the hair loss with Mom too. The thing is my mom is a very impatient person. She thought it was normal, just the result of academic pressure and predicted the hair would grow back. When I kept raising the matter, she got fed up.
One day I was mulling over my hair loss again after school, just vegetating on the sofa. She couldn't take it. She grabbed the first thing in sight—it happened to be a string chord, the type you use to fasten objects at the back of a motorbike—and mock strangled me.
She said: "Stop moping around all the time! Look at the people who are blind, deaf, mute or without limbs. Aren't they faring just fine? Who are you to be depressed all the time?"
I was traumatized. From that day onward, I started hiding my emotions. I never complained about my hair to her again.
3.
In senior high, the hair loss became increasingly obvious. When I used to tie my hair into a ponytail, the thickness was the size of a coin. Gradually it shrank to the size of my pinky finger. I started keeping my hair short.
In senior high, a girl I was on decent terms with started calling me by the nickname of "Hairless Gu." I was very sensitive about my hair then and felt hurt every time I heard the nickname. I resolved to get treated at a hospital that summer.
My mom took me to a hospital in Nanjing. The doctor told me I had seborrhoea. The main symptom was the contraction of my hair follicles. The condition started at the top of my scalp and spread in all directions, leading to soft and yellowish hair and a greasy scalp.
The doctor prescribed medication and recommended treatment by "plum blossom needles."
4.
"Plum blossom needles" refers to a toothbrush-like instrument filled with needles. The treatment entails tapping the scalp with the implement until it bleeds—which supposedly refreshes one's collaterals—then smearing the scalp with fresh ginger.
That summer I had my scalp tapped every day. The "toothbrush" couldn't be removed until the needles were lodged into the scalp. They were tainted with blood afterward. The process was excruciatingly painful. When the raw ginger was applied, my scalp burned, but that actually excited me. The more it hurt, the more effective the treatment, so my logic went.
In the second year of senior high, I also visited a branch of Zhangguang 101, a company that specialized in treating hair loss. I had medication applied to my scalp daily. When classes started, I brought the medication to use at school, where I was a boarding student.
Every night after lights out at 11 a.m., while everyone else slept, I sat up in my bed and applied the medication in the dark. I did a mess of a job due to the lack of light and a mirror. The next morning my hair would look like a bad mousse job—stiff and appalling.
One morning a few classmates spotted my weird hairdo en route to the classroom and asked about to. Panicking, I mumbled an excuse. After that, I stopped using the medication at school.
The Zhangguang 101 branch near my house eventually went out of business. I proceeded to try a slew of different treatments, including the Bawang brand of shampoo and all sorts of hair growth products. Unfortunately, none of them made a big difference.
5.
After finishing my university entrance exams, I wanted to resolve my troubles once and for all. I decided to shave my head.
It was a fair day. A classmate kept me company as I visited an old-school barbershop in a side alley. The shop was empty. The barber was an elderly man. He asked me why I wanted to shave my head. I removed my hat and he understood instantly.
He did a very thorough job, shaving my entire scalp with a razor blade. When I got home, my parents were stunned.
When I started university, many people looked up to me, thinking it was cool and brave for a woman to shave her head. The fact is I was still very sensitive about my haircut, donning a hat or a wig every time I went out.
I lived in a dorm with a shared shower facility. I was terrified of being seen bald. During freshman year, I would shower alone in an off-campus bathroom. When I grew some hair, I stocked up on bubble flasks. I'd generate a bit of foam before gently massaging my hair, in the hope of preserving that precious little patch.
During my short hair phase, I bought a few thick hair bands to conceal my hairline cracks. During volleyball class one day, I was struck in the head, which sent my hair band flying.
I was reduced to a dizzy state. I felt as if everyone had discovered my secret. Before I could gauge the reaction, I scrambled to retrieve my hair band, put it on and made a beeline for the toilet.
6.
It's hard for the people around me to empathize. Some people wonder if I'm not mentally tough enough. Someone once said: "Look at Prince William! He's loaded and he's balding too. Cheer up!"
As far as I'm concerned, as a girl, my hair is genuinely a major issue.
Hair loss also makes me worry about my marriage prospects. Back when I had a boyfriend, I confided in him about my hair. He said: "I don't mind. When I make enough money, I'll pay for a hair transplant."
Yet we ended up breaking up.
I've suffered for so many years because of my hair loss since my student days. The next step it to come to peace with it.