The Unexpected Life of "Drug Life" - Exemption from the Black Death of the Century, the Second Lifeline for HIV Carriers - Reporter The Reporter
This year (2022) marks the 25th anniversary of the launch of Taiwan's AIDS (HIV) "cocktail therapy". In April 1997, the Department of Health (now restructured into the Ministry of Health and Welfare) began to provide free use to patients in AIDS-designated hospitals across the country. Prior to this, AIDS was regarded as the "Black Death of the 20th century". There was no cure for AIDS, and almost all patients were diagnosed after the disease had developed. Once diagnosed, it was equivalent to a declaration of death. Death within 2 years.
AIDS "cocktail therapy" has changed the lifeline of HIV carriers. The disease has been removed from the Black Death, but even if the virus cannot be detected after treatment, they still have to take medicine for life. What has been lost is social disparity that has hitherto been harder to control than the virus.
What is it like to have an unexpected life? "Reporter" interviewed 5 HIV carriers who were the first batch of HIV carriers in Taiwan to be treated with cocktail therapy. Some of them still suffered from physical and mental suffering, their body reduced the amount of HIV, but their depression index increased; some chose to join volunteer work. Let your life experience inspire more people who are struggling in difficult times.
(Editor's note: The protagonists of this article are all pseudonyms.)
Occupation: Freelancer Age: 58 Years of infection: 1996
I tested positive when I was around 31 or 32 years old. A few years before that, my life was just changing jobs, falling in love, and breaking up.
In 1992, Yang Jieyu, the founder of the current Care Home, Tu Xingzhe, a resident physician at the Taipei City Venereal Disease Control Center, and Chen Yimin, a professor at the Institute of Preventive Medicine of Yangming University, jointly promoted the "Yiguang Volunteer Organization" as a non-governmental prevention and treatment organization, providing AIDS service work.
I had a stable job in the airline industry, and the salary allowed me to pay off my family debt quickly, but I didn't like the job, so as soon as the debt was paid, I quit my job and traveled the world, my last stop in New York, where Met a Thai boyfriend. I didn't think long after I came back to Taiwan, so I decided to fly back to New York to find him. I was going to go to the graduate school to stay there and live with him, but I broke up not long after that. There was no reason to stay, and I came back in about a year.
More than a year after I came back, because I have been regularly screened whether in the United States or Taiwan, one day I received a call from the STD Prevention and Treatment Center (now the "Taipei United Hospital Kunming Prevention and Treatment Center") to tell me the positive result. What I thought to myself was, "Oh, this day has come." Although I don't want to say it was because of the breakup, it was true that the frequency of my risky sexual behavior increased a lot during the year I returned to China.
Maybe you will think that I have seen so many carriers so early, so many people died without drugs in the early days, but I still got infected in the end. Because I know I am at risk, but I still choose to continue to love, I feel that God has given me an innate gift to love bravely. So although the disease of HIV appeared in our world, I was not afraid of getting sick and eventually got infected.
AZT is a class of reverse transcriptase inhibitors that can inhibit HIV, but HIV mutates very quickly, and a single drug is ineffective.
Of course, at the beginning of the cocktail therapy, we didn't know we were on the (survival-improving) course, and some people were suffering from taking the medicine and often wondered if they were going to endure it. I would never have imagined that our "future" still has so many years to come.
At the beginning of the treatment, I also had a very painful period. Although my memory is a little vague, I started to get sick before taking the medicine. I have to get it back, because those medicines are too precious to eat. This should be the most painful process in the beginning, but I still survived.
I think this disease is to help us understand life more deeply. This is the biggest feeling I have left. A lot of people left at my stage, some people left without waiting for the medicine or the side effects of the medicine; but I didn't, and I went through these ordeals, but I stayed.
Having continued to live 26 years after treatment, I feel so fortunate to have the opportunity to see life in a different way and experience things. For example, now that I'm semi-retired, I haven't been working full-time since I was in my 40s. Life does not specially plan the daily itinerary, I want to enjoy the process, get up early every day, I will know what I want to do. Not wanting to plan things with a purpose is what I think at this stage. I don't know if I can be so presumptuous when I'm older, when my fears are bigger, or when I'm older, but I can now, so I don't want to tied to the plan.
Unexpectedly, I fell into a period of depression instead. For 3 years, I was locked in my room all day, taking sleeping pills to sleep at night, getting up in the morning, opening the curtains, and taking another sleeping pill to sleep. One day I figured it out, "break out of the cocoon", thinking about how I can live without a job?
I think, to be able to experience these, life is so worth it! I don't know what the next possible challenges in my life are. If I live long enough, will I go through the same predicament again, and will I have more confidence in myself? I don't know, I just hope that every day that I can live, if God is going to test me, give me a new challenge, not the same, because I may get over it soon.
Occupation: Hairdresser Age: 50 Years of infection: 1997
When I was 25, when I wanted to donate blood, I went for the first blood test. At that time, I was HIV negative. After a while, I passed by the STD treatment center at that time. Notification phone.
To be honest, I wasn’t mentally prepared at all. The person on the other end of the phone kept telling me that I only felt my world was spinning. At the same time, the other person was still telling me to apply for a major injury card, otherwise I wouldn’t be able to afford those medicines. . I didn't particularly think about how long it took me to "accept" this. After all, it all happened. I just thought, if I have the medicine, I will take it.
As a result, 25 years have passed.
But the advent of cocktail therapy, at least for me at the time, gave me hope. Seeing the process from no medicine to having medicine, at least you will know that it is not a terminal illness. At that time, the medicine prescribed by the doctor was only 6 medicines a day, which is less than many people, and taking medicine is not too big for me. Side effects, but it seems that because that drug was discontinued and replaced with a melting drug, I began to have rashes, allergies, and nausea and vomiting all over the body. I changed the drug again and it was much better. I know a lot of people suffer from drug side effects, I'm lucky, my bigger problem is not being able to take my medicine on time.
For example, the medicine to be taken for dinner happens to be a dinner party with friends, and I can't take out a handful of medicine to eat, which is really difficult to cope with and explain; I was still a junior college student at that time. After I knew that I was infected, I didn’t let my family and friends know about it. However, I had many questions like this and I didn’t know who to ask for help. Fortunately, when I went to see a doctor, I met Xu Senjie, secretary general of the Lourdes Association, outside the clinic. , he gave me a business card and told me that I could go to him. I went to the Lourdes Association with a feeling of "no matter how bad it is anyway", and I met 8 or 9 people with the original condition, and everyone exchanged the situation of taking medicine. So there are many solutions.
In the 25 years since I became a carrier, my attitude towards life has always been very casual. Maybe I am a Sagittarius, and I have a brighter personality. Although I can make some plans and plans, I still tell myself that these plans are just in case, and I have to live. Until then. From the very beginning, the idea that I made up was "Forget it! Let's just leave it like this, one day counts as one day!"
Moreover, the social atmosphere up to now has always made you feel that you have a disease that is not suitable for you to confess to others, and the people around you may seem to be okay on the surface, but they are gradually distanced, so I do not insist on having The imagination of a long, stable relationship. I have also really encountered my partner who attacked me with "AIDS" after a breakup; I felt hurt because the person I once liked became a stranger.
However, all the things that I feared after I survived treatment, such as I would lose a lot of opportunities, my job would be affected, no money to take medicine, etc., did not happen. As long as you survive, life is the same anyway, and what you should do is still to be done. I also now live a life that I feel very satisfied with.
The biggest turning point is work. I was in my 20s when I was engaged in a highly replaceable service industry, which gave me the idea of changing careers, but I didn’t know what I wanted to do, or because my mother said " Didn't you like to play with Barbie dolls the most when you were a child, your hair is about to be cut by you, you don't know how to cut your hair?" That's why I resigned at the age of 35 and went to the Vocational Training Bureau for training. Of course, the process was not easy. Now I have 2 hair salon.
In the past 25 years, I have become more introverted, and I have begun to notice what can and cannot be said when talking with people; I have also come into contact with the Lourdes Association, and I have heard more different stories from people who have brought the origin. I think this is a good thing.
Occupation: Engineer Age: 52 Years of infection: 1998
At the age of 27, when I learned that I was HIV-positive, it was the most chaotic period of my life. My father is not in good health, my mother is responsible for making money to support the family, my brother is an alcoholic, only my sister who is one year older than me has the best relationship with me, but my sister died in an accident at the age of 28, which made me decide to face In life, I mustered up the courage to go to the screening and have a look.
The HAART drug combination is limited to a maximum of 26 pills, but the physician may assess the condition plus other preventive or symptom-relieving drugs to give the patient.
I am thin and weigh less than 50 kg. I can smell plastic on my body even when I go to the toilet, and everyone around me can smell it. Too many drugs also cause me to have diarrhea constantly. I just came to Taiwan on cocktail therapy. the first year. At that time, memorial meetings for HIV carriers were often held. Some people did not wait for the medicine, and some people died first. Although I did not have the disease, but after taking medicine for more than 2 years, kidney stones, pulmonary embolism, etc. There are no less side effects such as diarrhea, and no doctor is even willing to open surgery. At that time, I thought every day, just give up, it might be better to end my life, because the days of swallowing plastic like this are so painful than surviving.
CD4: T cells with CD4 receptors, because the HIV virus specifically attacks cells with CD4 receptors, CD4 values can be used to measure the immunity of infected people. Generally, the normal value of CD4 should be above 500/μL. Virus amount: The amount of virus in the blood of the infected person. The higher the virus, the stronger the infectivity. At present, Taiwan believes that the virus quantity is less than 200/mL, and it is not contagious.
I survived the side effects of the drug, and after 10 years, the cocktail therapy became more and better, and I began to return to normal life, but I faced the stigma of others; now after 20 years, I began to face caring for my mother, and also I have my own aging issues, and I often think, what is the meaning of my existence?
All life issues revolve around HIV. Do you want to tell your family? I choose not to. What about a partner? For people of my age, it may be better to find a partner who is also a carrier, but it is not easy to know someone and be willing to be together.
In 2007, it changed its name to Taiwan Lourdes Association.
Although I went through the most painful period of my medication, I have been seeing psychosomatics for a long time to this day. From the pain of taking medicine, economic pressure, to the atmosphere of social stigma, discrimination, the way some people look at you, or the possibility of exposing the identity of a carrier when applying for a job, there are all kinds of pressures, but I have no emotional outlet, and I start to lose sleep. Until now, I have been suffering from severe insomnia—going to bed at 11, waking up at 12, and waking up at 1, so I am still adjusting my medication and considering seeking psychological counseling.
I also suffered a lot from medical treatment outside the infectious disease department. I first took medicine at the General Hospital of the Three Military Services. At that time, the hospitals had no concept of privacy protection for HIV carriers, so I went to the general infectious disease department to see a doctor. The doctor will ask 4 or 5 patients to wait in the consultation room at a time, so other patients can clearly hear their medical history and treatment status; and HIV medicine cannot be taken at the pharmacy, so I have to wait until the doctor's consultation is over, and then follow He went to his laboratory to get medicine.
Regarding privacy protection, I also had a very troubled period when the policy changed. At that time, there were already case managers, but the government was also considering whether to let the health center also carry out case management work. Therefore, when I had been infected for more than 10 years, I still received a call from the health center staff, asking me why I was young. It was easy to get sick, and I had to check the information. In the end, I had to call a manager I knew before to solve this embarrassing matter.
Although there are more and more friendly hospitals for medical treatment, I also feel that there is a big gap between urban and rural areas. In the past, when blood was drawn, doctors and nurses would wear two layers of gloves and layers of protection, as if we were really poisonous; now there have been obvious changes in big hospitals, but rural areas and dentists are still unfriendly. Last year, I just had a small thing stuck in my gums and needed a simple treatment. I went to the clinic to leave the information, and when I got home, I received a call from the doctor, hoping that I would not go to their clinic for further treatment. Now I try to take care of my teeth by myself, and I don't go to the dentist at all.
I think "internalized stigma" is difficult to remove. Today's children are more easily accepted in terms of gender identity and social identity. Unlike the times we live in, the traditional values of society are heavily weighted on them. Your name becomes a part of yourself. You have to spend a lot of time with yourself and slowly reconcile with yourself. This process is very stressful for me.
When I first got infected, I heard that the "5-year survival rate of HIV infection is zero". I met an old friend a while ago, and he was the first one that shocked me. It turned out that HIV could be so severe, but he still survived, even now, every second is still very hard. This gave me a deep sense of impermanence. We agreed to meet again in 10, 20, and 30 years. Everyone was on the same train. Some people got off the train first, some people continued to ride, and some people chose to change trains and lost contact.
The bitterness, the sweetness, the sadness, the tears, the stigma, and all the miscellaneous flavors are all in your heart during these years. Those fragile moments also have strong moments, and you will always find a way to adjust yourself back.
Now my life is slowly becoming smoother and simpler. In order to accompany my mother who is over 80 years old, I left Taipei where I lived for decades and moved back to my hometown. I couldn’t socialize with my colleagues or friends after get off work.
This time, I am going to participate in the activities of the Lourdes Association. The 20th anniversary promises to return to the appointed place every 10 years to meet. This year is the 20th year. I think this is a great celebration, and I also want to say to myself that I have worked hard.
Life is like what the Buddha said, where is the fastest way to become a Buddha? The answer is "world", there are ups and downs here, you will become a Buddha after you taste it.
Looking back on my life in the past few years, I think about the lack of good medicines more than 20 years ago, and so many people were sent away. Now the memorial meeting is not because of illness, but almost all accidents, suicide or drug addiction, especially when I look at some people. Friends fell into the pit because of drug addiction and so on. I have walked all the way and survived the painful period of drugs. Today, Taiwan is one of the most gay friendly countries, but there are still many unfair and hurtful places. I think it is worth going to this day, but I also Still thinking about and sorting out myself, what the extra 20 years mean to me.
Occupation: Retired Age: 56 Years of infection: 1999
When I was 33 years old, I, who had always been healthy, suddenly had two illnesses. One was that I had a cold that would never get better, and the other was that my liver index suddenly increased and I was hospitalized. It didn’t take long to find out that it was because of HIV infection, which made my immune system immune. It's not good to keep the disease bad.
The moment I learned the positive result was mixed. I would go for screening once every six months to a year, which means that I know that I have a certain risk of infection, but when it is really positive..., what I can do is to deliberately not let this matter interfere with my life. Life, I don't accept it, I just put this thing aside.
In fact, compared to many people, I am smooth in all aspects. I have a stable job, I rent a house and live outside, and I don’t have to think about how to take medicines without hiding from my parents. At that time, with regard to HIV, because of the cocktail therapy, the social atmosphere was no longer worried that the infection would die immediately, but "How much will the lifespan be shortened?"
At that time, there was a program "How old can you live" circulating on the Internet. You need to input your living habits, such as how many years old you can lose from smoking and how many years old you can lose from drinking. One of the questions is "Are you a carrier of HIV?" As soon as you press confirm, you will be able to live 20 or 30 years less.
But to a person in their 20s or 30s, you may only live to 50 or 60, and there is really no pain. All I know is that with HAART, significantly fewer people left; but the side effects of HAART were also the most troublesome thing for me at the beginning of the infection.
At the beginning, the doctor gave me 3 different medicines, which I had to take 3 times a day, with many times and a large number of pills. Almost every medicine had side effects. I used to take medicine to cause kidney stones, or I was drunk first and lost my mind, and then I had a severe headache. The doctor changed the medicine frequently according to my condition. The last one was the most suitable medicine for me. The side effects are only I still feel nauseous occasionally, but I also stopped by the side of the road to vomit halfway after get off work.
In the past 23 years, as a carrier, I think I am lucky, and I don’t have to worry too much about my family, work, and economy; for me, the part I have been searching for that has not yet been answered is to become a carrier Later in life, intimacy cannot be fulfilled. Before the infection, I saw a person I liked very much, and I could meet and pursue it, but after the infection, I always thought that there were still many problems in the future, and I became a person who was very inactive and passive about the relationship.
I'm not a person who is very good at making friends. In the past, many friends were met on the Internet and in the sauna, and they knew each other when they saw the right eye, but can I do this as a parent? Even if it’s safe sex, I’m stuck on the question of “Should I tell the other person?” because it’s hard for me to grasp the other person’s reaction. Some people think it’s okay to have safe sex, and some people think why should I do this? to deceive me?
I broke up with my boyfriend of 8 years last year. I didn't have the courage to tell him during the process, but I put the medicine in the medicine cabinet and didn't hide it. He found out when we had been dating for more than a year, but he didn't take me seriously. In the interview, I only brought up this matter during a quarrel, which made me feel morally sorry for him. After thinking about it, our sexual relationship also stopped completely at some point, can I blame him? Should I blame myself? The disease has made me the one who owes me in the relationship, and the guilt is still there.
Undetectable equals Untransmittable, if the amount of virus in the blood of HIV-infected patients lasts for more than 6 months and is controlled in an undetectable state, there is no risk of transmission.
However, U=U has a big influence on me. Compared with the time when I started treatment with cocktail therapy, I didn’t think much about it, and I didn’t particularly think that life could be restarted because of drugs. I just think I was lucky. If the infection was earlier, it might have been widely reported, and the choice of drugs might not have been. Too many will die, so I am glad that I was relatively late when I was infected. When U=U in 2019, if the virus cannot be detected, it means that it has no infectivity. This concept made me feel "reborn", and the impact of the disease on me is no longer so great.
In addition to intimacy, which I think is the most important "problem to be solved" for more than 20 years, I don't hesitate to do things. Whenever I hesitate, I tell myself, I don't know how long I will live! Then do it!
For example, I am only 56 years old, and my job is stable. In fact, I can retire at the age of 65, but I don’t know how long I can maintain my state. I have high blood pressure, degenerative arthritis, and my physical strength is not comparable. It used to be fine. For me, the pressure at the end of my life has become greater as I get older. It is better to have fun and enjoy life! So I will retire in February this year. I want to take care of my body, plan more sports, walk the trails, go to the gym, hang out with good colleagues and friends, spend more time tidying up the house, and find some interesting people things to learn.
Occupation: Office worker Age: 50 Years of infection: 2000, 3 months pregnant
I remember very clearly, the day I received the call from the hospital to inform me that I was infected with HIV, it was after 7:00 in the morning. At that time, I was just three months pregnant with my second child. The hospital was also responsible for delivering my first child. They knew that my life was simple. , I suspected that the inspection was wrong, so I asked me to find time to re-examine it again. I replied to her on the phone, "Wait for a while."
This "wait" is a week.
Time seems to stand still this week, I can't talk, I can't do anything, I just keep asking myself: My life is so simple, I'm only 28 years old, what am I doing wrong? Why should I be punished like this?
I finally got up the courage to ask my nightlife husband if there was such a risk, and he said "yes". What I remember most is when he said to me, "I'm a murderer." Because at that time hearing about AIDS was like dying soon, and he felt so guilty that my whole life was gone.
But I didn't feel like I was going to die at all, and I didn't have time to be depressed. There are already 2 HIV carriers in my family, and I am the mother of 2 children. At the moment, I don't even know if the daughter in my womb is an AIDS baby, and whether it will become the third carrier, I must be strong , Live bravely.
I lived in the central part of China, and hearing about HIV in the surrounding environment at that time was like the "Black Death", and I was destined to live soon. AIDS is a very scary word even in the hospital, and it is very difficult to seek medical treatment. I intuitively wanted to find a female infectious disease doctor, maybe it would be easier to communicate, so I went to Taichung Rong to see Lin Yuhui, an infectious disease doctor, and I saw this day all the way.
But getting pregnant and giving birth is not that easy. No hospital dared to pick up a pregnant woman like me. At that time, Dr. He Hongneng, the former director of National Taiwan University Hospital, dared to deliver a delivery for a pregnant woman with AIDS. I had to drive to Taipei to deliver him. After the birth of the child, Huang Limin, the current director of National Taiwan University Children's Hospital, will be followed and treated for one year.
The year my child was born was the most painful year for me. It was very difficult to give medicine to my little daughter. I also told the doctor, I don’t care about the outcome. The AIDS baby may not live for a year, so why not let her good to leave? The world's stigma against AIDS is so serious, if you survive, you will have to bear the stigma for so many years, right? Fortunately, I survived that year. My daughter was sure that the test was fine. Neither of my children was HIV-infected. My daughter is now 22 years old.
I was fortunate to have had no side effects from my HIV treatment during my pregnancy. On the other hand, my husband's medicine has serious side effects and makes him very painful. The taste of the medicine is like disinfectant. After taking the medicine, he can't eat at all. During his treatment, because the child was in need of full care, I felt that I had to have a normal life time and environment, so we filed for a divorce, and I went back to my parents' home with the children. In fact, I also wanted to escape, because we have the same disease, and I really can't imagine that I might become like that. When we met again a few years later, he was already skinny and skinny in the hospital. The day after visiting him, he passed away. That year was 2006. It was only 6 years from the time he tested positive to his death.
In fact, 7 or 8 years after the infection, and after my husband passed away, I didn't take medicine for a long time, because my various values were well controlled, I felt like a normal person, I just wanted to Regular follow-up inspections. I just wholeheartedly take on the role of a mother, work hard, build a family, and my life and thoughts are all on them. Later, I found that my immune system was weakened, and my whole body became sallow and dizzy. I went back to find Dr. Lin Yuhui again. She said, "You have been skipping school for so long, so you should come back to class!"
After my two children went to high school, I had a lot of extra time before I started to think seriously about how to live my own life next. Before this, my mind was not on this disease, I just wanted to support my family well.
I've had HAART since I was pregnant, started taking medicine, and I've been lucky enough to take good care of myself. I survived, and my relatives joked to me, "You shouldn't have died if you didn't detect an infection 22 years ago. Is it? How did you live until now!” I would always say, “There’s no way the medicine is so effective!”
Because of this life experience, I want to give back to the society, including more than 10 years ago, when I shifted my focus to the Internet, hiding behind the computer and chatting with HIV-infected children, most children have no way to tell their parents and get support , and some have drug addiction and love-phobia, so I accompany them to chat and interact.
This generation of children, with the advancement of social atmosphere and drugs, has become a little braver. They will not be defeated because of HIV, and they will have their own circle of friends if they are infected. But no matter how open it is, the stigma and labels are always there. We still need a safe and private environment to let go of ourselves and say loudly: "I have HIV, I am very happy, and I am living well."
Even myself, until today when I went to the hospital to draw blood, I would encounter a lady at the counter who said to me, "How could you have this kind of disease?" The old doctor at the clinic would ask the same message when he saw the message popping up from the computer. I. I used to get angry in my heart and tell them not to judge a person by their appearance; later I would say that this is another form of "love" gift from my husband, and it makes me rediscover life.
In the past 22 years, I have met many very good people, including infectious disease physicians, obstetrics and gynecology physicians, I have a very solid family support system, my parents, family members, children, even good sisters, supervisors are also very good Support me and I am who I am today.
Especially my kids. It was not until my son was 18 years old that I confessed to my son that I was an AIDS carrier on the radio program "Voice of Lourdes"; my daughter handed her the press release after a certain press conference. Said, "The person written on it is Mommy!" But they all looked calm and said, "Just take your medicine, aren't you all right now?"
Before 2019, I was hiding behind the computer. At that time, Lourdes held a training camp that only female leaders could participate in. It was my first attempt to step out and appear in front of everyone. As a result, I saw a lot of My older women, each healthy and happy, gave me a lot of confidence. Now I work during the week and participate in association activities on weekends, as well as volunteers, bazaars, and even campus speeches, so that everyone can see that not all female leaders are hiding in the corners. The kids who just wanted to get credits and lacked interest, after listening to my story, would come to me at the end and say, "Can I give you a hug?"
No one really knows what happened to the Black Death in the 20th century. With HIV, and the continuous improvement of drugs, it will give people a feeling of rebirth. You may feel hopeless after being infected with HIV at first, but with drugs, you can come back and start again.
We have managed to survive for 20 years, and I don’t know if there will be more 20 years in the future, but I regard HIV as a beautiful and special memory, make fun of it in time, seize the moment, and love everyone who wants to love.
At that time, I would never have imagined that our "future" could have so many years.
The medicine gave me hope, knowing that what I had was not a "terminal illness"!
Survive the side effects of cocktail therapy, but rely on sleeping pills to fall asleep
It was not until the slogan of U=U came out that I felt that I had been "reborn"
Hopefully one day I can say out loud, "I have HIV and I'm doing fine," without having to hide.