After 16 years of battling psoriasis, I thought I was no longer worthy of love

Some diseases will take away life directly, like a violent storm that catches people off guard. Some diseases will not take away life, but will drip into every corner of life like a silent drizzle. The pain of the former is short and intense, while the torture of the latter is slow and long, making patients constantly feel restrictions, prejudices and helplessness in the day-to-day self-competition. It does not end life directly, but consumes the quality and dignity of life bit by bit.

Psoriasis (commonly known as "psoriasis") is one of them. According to a survey, 89% of psoriasis patients said they had mental stress, 78% of patients had suffered discrimination, 34% of patients had suicidal thoughts due to psoriasis, and 5% of patients had committed suicide within a year.

Moya (pseudonym) became ill at the age of 13 and is now 29 years old. She has come a long way from hating the disease to accepting coexistence with it.

01

I got sick when I was 13 years old. A red spot appeared on my right ankle, the size of a 5-cent coin, and the skin would peel off. I didn't pay much attention to it at the time, thinking it was a bug bite. After two or three months, it developed into red spots on both legs. My hometown is a small city, and my father took me to the city's Maternal and Child Health Hospital. The doctor took one look and said, "We can't treat it here," and asked us to go to the hospital in the provincial capital. I was young at the time, and when I heard the doctor say that, I thought I had an incurable disease and I was scared and cried.

My father was an ordinary worker, and my mother worked odd jobs everywhere. She was busy all the time. At that time, our family was poor, so we didn't go to the provincial capital. Later, the rashes appeared on my arms and head, so my father took me to another hospital. The doctor prescribed a kind of western medicine, I forgot the name, but I only remember that I had to take more than 10 pills at a time, two or three times a day. It didn't help much, and the red spots on my body were still there.

The remaining plaque on the leg after the condition stabilized. Image source: provided by the interviewee

My parents also took me to a small shop next to the station. The owner prescribed me a pink ointment to apply three times a day. I didn't want to apply it at all, but my parents thought you were really ignorant. They took so much trouble to take you to see a doctor, but you didn't use the medicine obediently. I applied it several times, but it didn't work at all.

At that time, I only knew that I had a skin disease, but I didn't know what it was called. It was not until I was about to go to high school that the doctor at the Provincial Hospital of Traditional Chinese Medicine told me clearly that I had psoriasis.

Actually, after the diagnosis, my life didn’t change much. I still went to see doctors everywhere and took all kinds of medicines every day, whether they were topical or traditional Chinese medicines. Once after I went to college, my dad went to the vegetable market and met a medicine vendor who claimed to be from Yunnan. He brought a lot of rare and precious herbs from Yunnan, which were particularly effective for difficult and complicated diseases. My dad bought some and asked me to try it when he came back. I drank it once or twice.

I remember a very funny thing. Knowing what disease I had, my mother went to various hospitals to ask what to do if I had psoriasis. The doctor in our area had never seen this disease before, and when he heard that I had it, he was very curious and wanted to see me. My mother took me to the doctor, and the doctor looked through the medical books and compared my symptoms with a surprised look.

02

At that time, there was not much information about psoriasis on the Internet. I always thought that I was the only one who suffered such misfortune and that I was the only one who was unhealthy. I didn't dare to tell anyone. I felt very inferior and lonely.

Because there were also spots on my head, the doctor asked me to get an ultraviolet light treatment in a room in the hospital that ordinary people were not allowed to enter. I had long hair at the time, and as a child, I was vain. The other girls in the class were all dressed up and had long hair, and I wanted to be like them. But in order to make it easier to get an ultraviolet light treatment, the doctor asked me to cut my hair short. I was very sad and cried while getting my hair cut. When the barber was cutting, he found spots on my head halfway through, and he was surprised and a little disgusted. I saw his expression through the mirror, which made me even sadder. I cried and glared at him fiercely.

When I was a kid, I was lively and cheerful, like a tomboy, carefree. I was also thin, like a straw. I don’t know if it was because of the hormones in the medicine I took, plus puberty, I started to gain weight after I got sick. I weighed 130 pounds in high school. I was dark, and my hair was cut short, not much longer than a boy’s buzz cut. I couldn’t accept the way I looked. After I got sick, I became taciturn, highly sensitive, and moody. From the age of one to twelve, my parents would take me to a photo studio to take a photo every year on my birthday as a souvenir. I never took a photo since I was thirteen.

I was afraid that my classmates would find out about my illness, so I would wear long pants and long sleeves to school no matter how hot the weather was in summer. I remember very clearly that once the school was going to hold an event and city leaders came to visit, the teacher asked the whole class to wear school uniforms. Our summer school uniform was a knee-length skirt, but I didn't dare to show my calves. I struggled for a long time and finally wore long pants to school. The teacher criticized me severely. I had good grades in junior high school and was almost never criticized. This time I was severely criticized and felt wronged, but I didn't say anything. I didn't wear a skirt until I graduated from high school.

However, although I have them on my legs, hands, and head, my condition has never been particularly serious. It has stabilized after developing to a certain extent. I don’t get itchy like others, but my hands are very “unfair”. I will tear and pick at the plaques on my body. After tearing them off, they will turn into a layer of bright red skin, and blood will come out, and then there will be dandruff on the ground. It will hurt a little when tearing, but it is more of a spiritual pleasure, a bit like self-harm.

What bothers me the most is dandruff. Because I also get lesions on my head, as big as a fingernail, and in severe cases they are all over my head, and my scalp feels tight and stuffy. So every day I can't help but pick them or comb them down with a comb, and then a lot of dandruff falls off.

Scalp condition. Image source: provided by the interviewee

Long-term illness makes a doctor. Later, I figured out that catching a cold and having a fever would aggravate the condition, so I would try to avoid catching a cold and having a fever. Also, if there are wounds on the body, it is easy to form skin lesions, so you should also be careful to avoid cuts and scratches.

My parents didn’t have a good relationship. During high school, the pressure of illness, family, and schoolwork all added up, and I was on the verge of collapse throughout high school. I was very irritable and had many dark thoughts in my mind. I felt that “God is unfair to me” and didn’t understand “why I have to endure this”. I often cried in my bed in the middle of the night and had thoughts of suicide many times. At that time, I hated myself, my parents, and the world.

My choice of university was also influenced by this disease. I ranked last in the class of high school and barely got into a 211 university. I didn't choose a place far away, thinking that I could go home on weekends and let my parents take care of me. But I didn't want to go to university in Jiangxi Province, so I chose Changsha next door.

Taking a shower was a problem when I went to college. Fortunately, there were small cubicles in the public bathrooms. Although the doors were half-open, I would try to hide inside to take a shower. Once I found someone looking at me, I would look directly into their eyes. Usually, at this time, others would not be embarrassed to look at me anymore and would turn their heads away.

After four years of living together, my roommates didn't know I had psoriasis. I am an introvert, and I keep a certain distance when interacting with people because I am afraid of being exposed. When I eat with friends, they ask me why I don't eat so many things, and I lie that I am allergic. After a long time, they occasionally tease me with this, saying that if you don't eat, we will eat it for you to see. I will feel a little uncomfortable, as if my heart has been stabbed, but then I think about it, this means that they treat me as a normal person, which is exactly what I want.

03

Before I went to Changsha to study at university, my relatives in Nanchang took me to see a doctor again, this time at the Provincial Dermatology Hospital. The doctor there pointed to a leaflet under the glass on the table and said: Why don’t you try this medicine, which was just recommended to you a few days ago.

So I started taking this drug called calcipotriol, and I have been using it ever since. Only with this drug did my symptoms really ease. There were fewer red spots on my arms and legs, but there were still more on my back and head. However, this allowed me to wear short-sleeved shirts and shorts in the summer. Occasionally, a red spot would show up, and I would say it was a bug bite. Since then, my condition has been in a cycle of getting worse in the winter and getting better in the summer. In the winter, I wear more clothes anyway, so it is not visible.

Used drugs. Image source: provided by the interviewee

During college, a relative living in Hong Kong recommended a doctor who was well-known in the field of psoriasis. My parents took me to Dongguan for treatment. The doctor had white hair and looked very authoritative. She said earnestly that my disease would never be cured and I had to control it well, stay in a good mood, and pay attention to regular diet and sleep.

The authoritative doctor said so, and I had been treated for so many years without any cure, so from then on, I completely gave up hope of curing the disease. I was satisfied as long as I could control the disease well.

But at that time I didn't understand the importance of keeping a happy mood, and I didn't realize the relationship between mood and illness.

After graduation, my first job in Changsha was not smooth. After I resigned, I felt like a failure that I couldn’t even do a job well. It was around October or November. My condition was already serious in the winter, so I locked myself in a rental house in Changsha. My diet and rest schedule were irregular, and I didn’t distinguish between day and night. During that period, my condition flared up and my entire back was covered with it. When the disease broke out, it started with small local patches, and gradually each small patch would grow larger, and eventually these patches would connect into a large patch. I found that my back was like this. I tore it every day, and my entire back was bloody. The torn skin could be piled up into a small pile. At that time, I didn’t go out and wore pajamas every day. The back of my pajamas was covered with dried blood.

My parents noticed that I was not in a good mood, so they asked me to go home and rest for two months, and helped me to apply medicine to regulate my mood. After the Chinese New Year, I felt that I could not let myself be depressed anymore, so I started looking for a job in Nanchang. I changed jobs twice, and finally came to my current company, where the environment and treatment are good. My life has stabilized, and my condition has also stabilized.

My life state can be roughly correlated with my illness. When I am in a bad state, my illness gets worse. Looking back, when I was in high school, my illness may have been affected by my mood, but I didn’t know it at the time.

After my life became stable, I spent a long time gradually reconciling with my parents and myself. I tried my best to make myself happy. I wanted to work hard, make some money, travel, and provide for my parents. When my parents passed away, I would have nothing to worry about and I could choose a beautiful place to bury myself. I never thought about falling in love or getting married. For so many years, I never took the initiative to contact the opposite sex in my life because I felt that I hated myself and no one could accept me like this.

04

I play games and use some social software, and I have met some people of the opposite sex online. After getting along for a long time, I can sometimes feel that the other party wants to develop a further relationship with me. Once I notice it, I will immediately keep a distance from him or her, or even break off the relationship and stop communicating with him or her. I dare not contact the opposite sex, because I am afraid that the other party will dislike me if they know about it, and I am afraid of being hurt.

It was the first time that I had such a strong feeling to continue dating a man when I met my boyfriend. When he confessed his love to me, I struggled for a long time. Intellectually, I thought I should refuse and cut off contact as usual. I have psoriasis and should not fall in love. But I really couldn't bear to let him go. I even secretly shed tears during work hours. In the end, I made a shameful decision to have a relationship with him, experience the feeling of having a boyfriend, and then break up with him. He is nearly a year younger than me, so I don't think it would matter if I delayed him for a few weeks. I made excuses for myself and started dating him.

After dating for a week, I couldn't hide it anymore. I felt very guilty. I thought I was deceiving him and I should confess to him. I imagined the scene: I confessed my illness, he would definitely not accept it, and we broke up. So I was very sad, and I burst into tears before I even opened my mouth to speak. I told him about my illness while crying, but he asked a few questions, such as whether it was contagious, how I was controlling my illness, etc., and then he accepted it. He keeps saying this to me now - "People get sick from eating grains", it is normal for people to get sick. But I felt that I had done so much psychological preparation, how could you accept it all at once? I didn't believe him, and asked him to think about it carefully and go back to check it online. I told him to tell me your decision the next day.

The next day, he told me that he still felt that it was okay and that he could accept my illness. Later, he told me that he felt that it was okay at the time and that he didn’t need to think about it anymore. He told me the next day so that I would feel that he had thought it through.

It was the first time I showed my wound to others, and he accepted it calmly. His attitude towards the disease encouraged me. For me, psoriasis has affected my entire life - because of the disease, my personality has changed drastically. I chose internships and jobs close to home. Beijing, Shanghai, Guangzhou and Shenzhen are not unattractive to me, because I always need to apply medicine, and I am very dependent on my family both physically and mentally. But for him, getting sick is not a big deal. If you get sick, you just take medicine to treat it. He also said to me very seriously: "You are fine, you deserve to be loved."

After we got together, he would help me apply medicine. I live alone after work, and it is very troublesome to apply medicine on my back by myself. It takes half an hour every day to finish. Winter is too cold, and I can't apply medicine by myself, so my back will be more serious every winter. With him helping me apply medicine, my back has been much better.

Another thing also affected my attitude towards the disease. In 2019, I went to Anhui to attend a national psoriasis conference. On the last day of the conference, there was a free clinic by a well-known doctor. In those years, I also started to have symptoms in my fingernails, so I wanted to go and see it. On the day of the free clinic, the scene was crowded, and I saw many people with the same symptoms as me. That was the first time I felt that I was not alone. It turned out that so many people had experienced these things with me, and I was not alone.

Image source: Provided by the interviewee

05

A few years ago, I shared my experience with psoriasis on a social networking site. The reason was that a boy who graduated from Tsinghua University's Yao Class was looking for a spouse online. Later, it was revealed that he was a psoriasis patient and he was severely criticized. At that time, I found that the public still did not know much about psoriasis. After seeing a few pictures on Baidu, they thought the disease was scary. I shared my experience to tell everyone that psoriasis is not contagious. Please do not discriminate against psoriasis patients and stop stigmatizing psoriasis.

Being able to write this article shows that my attitude towards illness has changed. When I first got sick, I didn’t understand it and I hated it. It is said that students are the most likely to write, but I have never written anything about illness. At that time, I simply couldn’t write. Whenever I wanted to write about myself, my words were filled with hatred for the world and God, and my thoughts were extremely dark.

Until now, I still can't say that I don't hate psoriasis at all. Who doesn't want to be healthy? But now I can face it more calmly, and I won't blame others or give up on myself. My attitude towards psoriasis has changed from a life-and-death struggle and a mortal enemy to a peaceful coexistence.

After suffering from the disease for so many years, I have become accustomed to its existence. I have accepted it and regarded it as a part of my body. Therefore, I think that in most cases it will not have a big impact on me. Now it is mainly on my head. Others often see that the dandruff on my head is very large, which makes me a little distressed. In addition, it is difficult to apply medicine on the nails, and it has been slowly getting worse. I apply medicine on other parts on time every day, and there are very few dandruff now.

The condition of the hands. Image source: provided by the interviewee

Knowing that my condition is affected by my mood, I try to be happy every day. I treat psoriasis well while treating myself well. If it is not serious, I can live a normal life. My relationship with psoriasis is like a tree entangled by vines. I can't break free, but I can get along with it in a friendly way.

I got married on November 1 this year. Before the wedding, I chatted with my high school classmates, and they shared a photo of me in high school. In the photo, I was dark, fat, had short hair, and had acne on my face. I was very ugly. It was a "dark history" that I couldn't recall.

Now, I go to get off work and get off work on time every day. After get off work, I go shopping, watch a movie or play games, and meet my parents regularly. My life is very ordinary. Others can easily get a normal life, but I finally got it after going through a lot of hardships. I cherish it and am grateful for it, whether it is gratitude to myself or to my partner.

If there are friends who are also troubled and tortured by this disease, I would like to say to them that I hope you will not give up on yourself or others, love yourself and treat yourself well, everything will be fine and you can have a wonderful life.

Tang Jiaoqing (Chief Physician of Dermatology) commented:

Moya's story is a true portrayal of how psoriasis patients coexist with the disease. From her experience, we can feel that psoriasis not only affects the patient's physical health, but also has a profound impact on mental health and quality of life.

Here, based on Moya’s experience, we would like to talk about psoriasis from a doctor’s perspective.

1. The good thing about psoriasis is that it is not contagious, but the problem is that it is chronic and complicated.

Psoriasis is not contagious. When we talk about infectious diseases, we are talking about pathogens such as bacteria, viruses or fungi. Psoriasis is another type of problem, an immune-mediated inflammatory disease. Moya was worried that he would infect others, but this worry was unnecessary. On the contrary, people with psoriasis can interact with others normally and will not spread the disease to others through contact, air or other means.

Although the exact cause of psoriasis has not yet been fully determined, studies have shown that its onset is the result of multiple factors, such as:

Genetic factors: Psoriasis has a certain genetic tendency. Studies have found that about 40% of patients with psoriasis or psoriatic arthritis have a family history of the disease.

Immune system abnormalities: Psoriasis patients have dysfunctional immune systems, especially abnormal T-cell-mediated immune responses, which accelerate the proliferation of keratinocytes and cause chronic and recurrent inflammatory responses.

Environmental factors: These include streptococcal infection, trauma, drugs, smoking, drinking, etc., which can induce psoriasis through complex mechanisms. Moya mistakenly thought it was an insect bite in the early stage of the disease, which may be related to her lack of knowledge about the disease. In fact, psoriasis is not caused by insect bites.

Psychological factors: Mental stress and mood swings are also important factors in the onset and aggravation of psoriasis. In high school, Moya suffered from illness, family and academic pressure, became irritable, cried frequently, and even had suicidal thoughts. These psychological factors may have aggravated her condition.

2. The manifestations of psoriasis are varied

The clinical manifestations of psoriasis are diverse, and the most common type is called psoriasis vulgaris. There is another particularly common name abroad - plaque psoriasis, which is also a typical psoriasis vulgaris. In our country, we are accustomed to calling it "psoriasis". It manifests as red patches on the skin, covered with thickened, multi-layered silvery-white scales. The plaques vary in size and can merge into a large piece, which is common in the scalp, extensor side of the limbs, trunk and other parts. Moya's condition belongs to psoriasis vulgaris. She has red patches on her arms, legs, and head, accompanied by peeling.

Other less common psoriasis types include:

Pustular psoriasis: Pustules appear on the basis of erythema, which may be limited to the palms and soles, or may spread all over the body.

Erythrodermic psoriasis: Diffuse redness and desquamation of the skin all over the body, accompanied by symptoms such as itching and pain, and the condition is more serious.

Arthritis-type psoriasis: In addition to skin symptoms, it is also accompanied by arthritis symptoms such as joint swelling, pain, and limited movement.

These psoriasis may transform into each other. In addition, there are some psoriasis in special parts of the body, such as inverse psoriasis (lesions mainly in the wrinkle area) and nail psoriasis (lesions on the fingernails and/or toenails).

In order to reduce the risk of misdiagnosis and incorrect treatment, if you suspect psoriasis, you should actively seek medical attention and receive targeted treatment after a confirmed diagnosis.

3. Psoriasis cannot be cured by medication, but regular treatment can control the condition as much as possible.

There is currently no cure for psoriasis, but scientific and standardized treatment can effectively control the disease and improve the patient's quality of life.

There are many local and systemic treatment options for psoriasis. The choice of treatment depends on many factors, including disease severity, related comorbidities, patient willingness (including cost and convenience), effectiveness, and assessment of patient response to treatment. Among them, the severity of the disease is a more important reference factor.

If the condition is mild and the lesion area is small, we will give priority to local treatment and daily moisturizing. Commonly used drugs include topical glucocorticoids, vitamin D derivatives (calcipotriol, calcitriol and tacalcitol), calcineurin inhibitors (tacrolimus and pimecrolimus), tazarotene, etc. Moya's symptoms were relieved after using calcipotriol, which reflects the progress of modern medicine in the treatment of psoriasis. In addition to topical medications, local phototherapy can also be selected, such as 308nm excimer phototherapy, generally twice a week.

In addition, topical treatment is also an adjunctive treatment for moderate to severe psoriasis. Systemic treatment drugs include retinoids, methotrexate, cyclosporine, apremilast, and biologics (such as adalimumab, etanercept, infliximab, ustekinumab, and secukinumab), and the effect can be seen within a few weeks of treatment.

Finally, it is also important to adjust your lifestyle and take daily precautions. Moya has been undergoing treatment for more than a decade since he was diagnosed with psoriasis at the age of 13, which reflects the long-term and recurrent nature of psoriasis. Fortunately, Moya has learned to manage the disease by avoiding colds and fevers, and being careful to avoid cuts and scratches, because there are some factors in life that can induce and aggravate the disease. In addition, maintaining a healthy lifestyle such as a regular schedule, a good mood, a reasonable diet, and moderate exercise can also help control psoriasis and improve overall health.

4. Call on more people to pay attention to psoriasis and eliminate prejudice

Moya shared his experience on social networking sites in the hope of eliminating the public's misunderstanding and discrimination against psoriasis, which reflects the importance of raising the level of social awareness of psoriasis. After all, many people lack understanding of psoriasis and mistakenly believe that it is contagious, which leads to rejection and discrimination against patients. As doctors, we also hope that everyone will pay more attention to psoriasis, reduce or even eliminate the prejudice against psoriasis, and create a more inclusive and friendly social environment for patients.

It is worth mentioning that Moya also participated in the National Psoriasis Conference. Seeing many people with the same symptoms as her, she felt that she was not alone. In fact, communication and mutual assistance between patients can be a good way to share treatment experience, psychological adjustment methods, etc., encourage and support each other, and enhance patients' confidence and courage in facing the disease. This is the meaning of mutual assistance. I hope there will be more social support in this regard in the future.

Moya's story is very inspiring. She gradually integrated into society through work and travel, and found her life goals and values. I hope that in the near future, patients, the public and doctors will be able to better face and understand psoriasis.

References

[1]UpToDate.Treatmentofpsoriasisinadults.https://www.uptodate.com/contents/treatment-of-psoriasis-in-adults

[2]UpToDate.Psoriasis:Epidemiology,clinicalmanifestations,anddiagnosis.https://www.uptodate.com/contents/psoriasis-epidemiology-clinical-manifestations-and-diagnosis

[3]ArmstrongAW,ReadC.Pathophysiology,clinicalpresentation,andtreatmentofpsoriasis:Areview.JAMA.2020;323(19):1945-1960.

[4]ElmetsCA,KormanNJ,PraterEF,etal.JointAAD-NPFGuidelinesofcareforthemanagementandtreatmentofpsoriasiswithtopicaltherapyandalternativemedicinemodalitiesforpsoriasisseveritymeasures.JAmAcadDermatol.2021;84(2):432-470.

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Author: Xuezhu Popular Science Creator

Review丨Tang Jiaoqing, Chief Physician of Dermatology

Feng Jun, Deputy Chief Physician, Department of Dermatology, General Hospital of Datong Coal Mine Group Co., Ltd.