Testimonials: Peoples' Stories & Experiences with HIV

T E S T I M TESTIMONIALS ONIALS

Peoples’ Stories & Experiences with HIV

Standing Committee on Sexual & Reproductive Health incl. HIV/AIDS Celebrating World AIDS Day 2016

Darkness cannot drive out darkness; Only light can do that.

Hate cannot drive out hate; Only love can do that. — Martin Luther King, Jr.

Introduction Many people are to this day unaware of what it really means to be living with HIV. Some think it is still a death sentence and something to be feared, so hearing a story from someone who’s enjoying a healthy, active life whilst managing their HIV can challenge these perceptions. On the other hand, there are people who think we no longer need to worry about HIV, and it is equally important to get across that it is still a complex condition which can impact your day-to-day life and negative reactions from others can have a very damaging impact.

Real life stories are the most powerful way of challenging misconceptions around this topic, and they play a big part in tackling stigma and prejudice. The less visible HIV is in our society, the less knowledgeable people are about it. These stories demonstrate the reality of HIV. Each one presenting a unique perspective, demonstrating a wide range of challenges as well as insights and successes and, individually as well as collectively, displaying extraordinary courage and hope.

Student, 15, Rwanda I am 15 years old, and it's been 10 years since I tested positive for HIV. There has never been a promising morning for me nor a bright evening hopeful dream to carry on the spirit of facing a new day. I was 9 years old when I first heard that I was taking AIDS drugs. My childhood friend who shared the same diagnosis told me. I did not agree with her that we had AIDS for my father had always told me I had a childhood disease but if I adhered to my medication I would be cured as I got older. It was not yet clear for me as to why I was taking antiretroviral drugs up to when I was 11 years old. I had never heard of HIV, but I had heard of AIDS from my community. AIDS was talked about by the elders in my community as a disease for women and men those whose infidelity betrayed.

When I was 11, the whispers spread all over my class that I had AIDS, and the stigma started right away. This time I had to ask my father if I had AIDS, who asked my doctor to explain to me what was going on, and how to behave as I was joining high school soon. My mother died when I was only 1 year old. I have never come to believe that I would live whole lifetime. It’s not just isolation I feel around people who know my condition, I suffer self denial - even around people who do not know about me. I feel like I am betraying my friends whom I cannot tell, yet they speak openly to me about every single detail of their lives. I dig into every book, paper and scientific journal on HIV I can get my hands on. I wonder if there is a possibility how I will make it to my next birthday! The thoughts keeps me awake, furious and tired. Lots of love to those who always stick around encouraging me, helping me to make peace with my mind.

Medical Student, 25, Ecuador 16-year-old male comes into the HIV clinic with his mother because a month ago he presented with fever to the emergency room, gets dismissed as the cause is not apparent and sent home with antipyretics and hydration. Goes back 2 days after with the same result. Goes to another hospital with diminished mental status, where after many tests someone decides to test for HIV. Test comes back positive; they test again, positive. Third time lucky? Once again, positive. His sister, a doctor, brings him to us. He states having started his sexual life 2 weeks before the onset of symptoms, still 15 at the time. His very first sexual contact has passed on the HIV. His mother just can’t believe it, she didn’t even know he had started having sex.

Medical Student, Sudan My personal perspective on HIV patients has totally changed since I started working in research about AIDS and depression. I started meeting many patients in the voluntary counseling and testing centers. The first time I went there I thought most of them would be depressed and absorbed by the disease, but what I found was totally different, they were filled with life, taking their drugs regularly and never complaining, comparing the infection to any other chronic disease.

It is important as medical students to get involved in fighting against HIV, with good knowledge and attitude on this subject, we can help in improving health education, prevention and awareness, elimination of stigma and helping those patients to access the care and the medical help. I want people that live with HIV to not take the disease as the end of life, it’s not curable but treatable, we can live with it.

Antiretroviral Therapy: the Success Story, Kenya According to UNAIDS Gap report 2016,

support. She is currently one of our employees

Kenya has a total of 1.5 million people living

in a program in rural Kenya and she is living

with AIDS. The current adult prevalence rate is

positively. Over the years, she has mentored

at 5.9% and 59% of adults living with HIV are

over 1,000 patients to embrace treatment and

on Antiretroviral Therapy.

positive living.

I started working with People living with HIV

The story of HIV/AIDS is no longer a

and AIDS (PLWHA) in the year 2000. It was

story of shame and stigma. It is a story of

not an intentional choice. It was a stop gap

triumph! Though a cure is yet to be found,

during a transition period in my life. Little did

its’ management has been made possible by

I know that for the next 16 years my world

free and affordable ART. It is disconcerting to

would be all about PLWHA. In the beginning I

realize that not all people eligible for treatment

thought I was going to “minister” patient and

have been enlisted. This could be due to

encourage them to have hope in life. Instead

limited availability and accessibility, awareness

they ended up ministering to me with their

by the PLWHA and corruption too, cannot

resolve to live and never giving up attitude.

be ruled out. The sustainability of ART in the

In 2000/2001, Antiretroviral Therapy (ART)

long term is also another source of concern.

was not common in Kenya and the few hospitals offering it had prohibitive prices. At one point, we were losing an average of three

Treatment programs in Kenya are largely donor funded and if funding is withdrawn or comes to an end, this would be a death nail for many

clients a month at our facility. These clients

people.

died fighting and hoping that a cure would be

Concerted effort should be focused not only

found. In one case, the client told me that she

in fighting HIV and eliminating it completely,

was dying while praying that a cure would be

but also ensuring that treatment is sustainable.

found for the sake of her 5-year-old son who

There could be many ways in which this can

was born with HIV. Today the son is a 20-year-

be done, including a particular percentage of

old handsome boy who is currently sitting for

income tax going towards an ART kitty or

his Form 4 exams. He was enlisted on ART.

having local fundraising initiatives. In addition

The advent of treatment has made a huge

to these, having a corrupt free country can

difference in the lives of PLWHA. In 2006, we had a client whose CD4 count went as low as 5. She was introduced to ART and nutritional

also ensure budget funds are used as per their intention and the surplus can go to the ART kitty.

Interview with 27-year-old man, Poland When I walked into his patient room, I was surprised. The heavy smell of cologne met me at the door as the smiling, young man on the hospital bed sat up to greet my entrance.

After introductions, I thanked him for his time and asked him about his recent diagnosis of AIDS. He shrugged his shoulders in nonchalance. Unsure that I was reading his body language correctly, I asked him, “Has it set in, yet?” He responded, “I thought that I had syphilis again. Well, I did have syphilis, but…” As his speech abruptly stopped, he took my hand and put it in his axilla. “Feel that?” “Yes,” I said, shocked by his openness. His lymph nodes were distinct and enlarged.

Me: How do you feel?

many sexual partners or have

Him: Generally, good.

you ever used drugs?

Me: Good. This is a very

Him: Sexual partners? [laughs]

personal question. Excuse

Me: What’s funny?

me for asking, but how do

Him: Nothing. [laughs]

you think that you contracted

Me: You mentioned that you

AIDS?

had syphilis?

Him: I’m unsure.

Him: Yes. Before and I’m

Me: Really? Did you have

being treated for it now.

Before I could ask another question, he began to tell me about his lover. He described how passionate their relationship was, but left out gender-specific pronouns.

Me: Sounds like you were in love. Are you still in a relationship with her or him?

Him: We are still friends.

Me: That’s nice. Forgive me, but I noticed that you do not use “he” or “she”. Why is that?

Him: I didn’t notice. [laughs] After several more ambiguous stories about past lovers and wild parties. He laid down on the bed, coughing. After asking to be excused, I thanked him again for his time and his candidness, but I was left pondering about the interview.

Kenya Many people take HIV as a killer disease and as a burden. I previously had the same perception but later came to view it as a normal disease/condition like any other.

I was tested yesterday for HIV/AIDS and tested positive, this was after being referred from my home area hospital to this one. At first I didn’t accept, I still don’t accept that I am HIV positive since am trying to recall from where exactly I got the virus, is it from touching the wall? My mind is flooded with many thoughts of depression. All in all after few minutes I consoled myself and tried to bring myself to the normal world. Today I say that being infected by the HIV virus is normal.

Talking about stigma. There was too much stigma before but now it has really reduced. I am yet to see how people will treat me when they come to discover that am HIV positive. I will test for 3 more times to confirm if am really HIV positive. My wife tested one month ago and she was negative.

The fight against HIV is important because it will reduce the spread of the virus.

Personally I can say that HIV reduces the development of a society.

Woman, 37, Egypt A 37-year-old woman born with hemophilia, has been undergoing plasma transfusions constantly since birth. Before marriage, her consultant warned her fiancée that she had hemophilia and she wouldn’t be able to get pregnant; in spite of that, he accepted this as God’s will and decided to marry her.

Unexpectedly, she got pregnant & her doctor told her she can remain so only if she transfused plasma every other day. When screening her blood they found out that she was HIV positive and instead of taking responsibility they told her “you can’t transfuse blood here anymore and you should go somewhere else!”

After the ensuing shock, she decided to ask for a divorce because she didn’t want to harm her husband. However, he underwent an investigations and found out that he was HIV positive as well. He decided not to take any treatment and died 4 years later.

Back in 2004 when she was about to deliver her baby, she went to the obstetric department of the university hospital but awkwardly they said “No, we can’t deliver your baby, go to the Fever Hospital or somewhere else.” They did nothing to alleviate her and worsened her suffering. Times were bleak, she didn’t know what else she could do so she went to another public hospital but this time she did not tell them that she had HIV fearing rejection once again. Upon arrival to the hospital, she delivered her baby.

Dentist, Ghana The first profession my elder brother desired was taxi driving. Then, it was the best in his eyes. He was only five. Two years after, he was dead set on becoming a doctor. I opted to be a dentist. My mum didn’t like the idea of living the rest of my life sorting through the smells of people’s mouths. She wanted to know how this strange dental love had sparked. I think it was because, even as a Ghanaian, I had fallen strangely in love with the tooth fairy of the west. And I just wanted to uproot enough teeth so she could build a tooth world in which all my dreams would come alive. Our dreams then were probably the realest part of our lives.

So tangible, as could only be in the mind of a child. In my mind it was so much more within grasp than picking up the skill of lacing my own shoes.

The child sitting across the table from me didn’t seem to have any dream. His eyes were not the kind a child usually had. Those eyes that were so filled with starry dreams that you could have drowned looking into them.

“Isn’t there anything you’d like to become in future?” He stared at me blankly. “Not even Superman?” At that point, I wish he had at least managed a smile. Rather he began to sob; silently at first. Then he began to shake uncontrollably as the tears poured freely down his face. He cried and cried. I took him into my

arms and whispered unto him some soothing words...but my words of hope were hollow. I spoke them without hope.

His guardian had called a halt to his school going. Her reason was almost sound. She didn’t have enough money to fund it. Okay, that was just her cover-up. The truth was that the boy was going to die soon. Why waste money on him? Since he had been left in her hands after his parents died of the strange illness, she had been counting down to his death. Of course she loved the boy...dearly. At least she could convince herself so. What she was struggling with was how to maintain the balance between love and wisdom. How much more could she contribute to the life of this dying child while she was so impoverished to even take care of her healthy ones. Food she would provide, but school, that could be ignored.

The boy just might have had a dream or two burning in his heart if he had been given the opportunity to, from time to time, play with the neighborhood kids. He wasn’t asking for anything more, you see. He cried more as he told me how his guardian had banned him from joining the other children in chass kele and alikoto. Just a game wouldn’t hurt anyone, would it? But mummy said it will. She kept her indoors in his special carved out space in the

house lest he infected them all with the disease he had.

His guardian watched him closely daily. He loved him. When the ear infections, the frequent colds and the diarrhea began, she knew she had to put her feet down. She had to uphold her principles. Somewhere up in her head she didn’t feel it was morally right to have this boy with this illness mix up with the other children unbeknownst to their parents.

She felt honestly that it wouldn’t be fair to their parents to know that such a child had been unleashed to play with their children. Some form of permission had to be taken from them first and she didn’t know how she was going to do that. In the spirit of goodwill, to satisfy her conscience, she rather kept him indoors to fellowship with her own children. That also was for only a while.

The doctors said the illness couldn’t be passed on by just play. But the doctors had lied before and she wasn’t ready to take chances with this one. Hadn’t they predicted that her first daughter was going to be a boy? Eventually she had given him his own special boundaries in the house so he wouldn’t go near her children either. She had more reason to believe so.

If the doctors were that knowledgeable, her sick husband wouldn’t have died. They didn’t

know all. She at least allowed the boy out every month to the HIV/AIDS clinic at Komfo Anokye Teaching Hospital, and that is where I met the boy and heard his story.

He didn’t have any dream because he knew he was going to die soon. A dying boy doesn’t dream. Because whether he was in himself capable of accomplishing those dreams or not, that would have literally meant that he was building castles in the air. He was the boy on death row, served the capital punishment by nature herself.

The HIV/AIDS clinic has been doing its best, though under-resourced, to bring some hope back to this boy and all others like him. The clinic mostly runs labs for them to monitor their progress and provides antiretrovirals. But funds are running out and these children are mostly too poor to take care of these costs.

The clinic has a club for the children. When I heard its name I cried too – The Future Leaders Club. Its poignant truth sank into my heart. It’s probably true, that they might never move beyond the point of being future leaders.

It is possible to do a local action with international reverberations. It probably starts by writing the story of these children sitting here in my small hostel room.

Medical Professor, Czech Republic During all those years in which I dedicated my life to consulting service and anonymous public testing I had only two HIV+ patients. Their stories are sad. The first one was a heterosexual male with a stable girlfriend in (at that time) Czechoslovakia. Right after receiving his college degree he traveled for an internship to another state where he got infected. I didn’t ask him if he had one or more women, however it seemed that the other woman didn’t know about her diagnosis. She was working at the place he was spending his internship. Six months is quite a long time at that age and apparently it was just a hookup because he knew that after coming back to Europe there is his beloved girlfriend waiting for him. This happened in early 1989. After his return he lived with his girlfriend and he wasn’t examined until the summer of 1990 when his partner discovered enlarged retro-auricular lymph nodes. Meanwhile she graduated and they had majestic plans together. They wanted to leave the country and live in USA or Latin America.

They were both excellent at languages. (Un)fortunately, at that time it was required to be HIV-negative before entering America. So they had to cancel their life plan, for good.

Even though he had been living with HIV unawaringly for at least 12 months, his girlfriend didn’t get infected. I tested her right after the detection, then after 3 and 6 months, the results always came out negative. I was very relieved that she was fine. At those times the only medication was azidothymidine (Zidovudin) and the hope for the long life was out of the question…

This story has no happy ending. Nowadays, they could have lived a full-fledged life. That guy wasn’t promiscuous. He loved his girlfriend. He was just far away for 6 months, and the fact that he cheated, well, in our culture it is often overlooked and forgiven. His girlfriend stayed with him until the end.

HIV+ Woman, 70, Germany I got the diagnose when I donated blood. I had been donating blood for almost 20 years, and this time I got a call that I should visit the doctor because there were some abnormal blood test results. The doctor was very young. He murmured sentences like “If you belong to a risk group you shouldn’t be surprised” or “Why didn’t you take care of yourself ?” but I didn’t know what was going on. After I repeated “What should I take care of ? What’s the point?” over and over again, he screamed at me “You are HIV positive.” I was completely in shock. I just thought “don’t faint now” because I usually get very dizzy when I am upset or agitated. Looking back I know almost exactly when I got infected. I was 49 years old and already divorced twice when I met John, he had come from the Ivory Coast to Germany a few months earlier. We fell in love and were going to marry one week after my diagnosis. John didn’t believe that he was the one who infected me and he refused to get tested himself. It took me a while to persuade him but finally he went with me to a clinic where they took his blood. It was HIV positive as well, he immediately passed out when he learned about the diagnosis. John had a son in the Ivory Coast. Before the diagnosis we both planned to bring him to Germany and raise him up together. But when I knew I had HIV, I was too afraid and insecure about the future and I told him I couldn’t do it. John was very mad at me. He couldn’t understand that the diagnosis affected me so much. For him, after he digested the first shock, the diagnosis wasn’t too much of an issue. We argued because I had the need to talk about it more than he did and I didn’t want to turn to my family with it because I didn’t want to be an additional burden. I developed a severe depression which is still giving me hard times. I think the main problem of the infection is not the medical treatment. What we need is an open-minded and interested society that shows empathy and understanding.

There are already many people that offer their help. If everybody used their common sense in dealing with HIV and AIDS and foremost with the affected people, life would be much easier to handle.

Man, 32, small village outside Dar Es Salam, Tanzania Getting “the disease” is not the worst part; knowing that other people know about your status is worse in this small society. People talking gossip behind your back; about how you got this, that you probably cheated and are gay and have a secret lover. The reality is that I got this because of the society wanted me to be “clean” and circumcised my brother and me when we were just 10, with a knife they had used for the whole village without cleaning it. Many of my friends died from that but I was lucky to survive. It is the society’s fault I got HIV but still they are judging me for being unclean and people just close their eyes and don’t want to see the truth. The stigma is really bad! I’m lucky that I got antiviral medicine but many people are still afraid of going to the doctor and die of the disease. People know that without medicine you die but because of the society many people choose not to go to the doctor because the people will judge them if they know. People in the society are so afraid that they forget that it could happen to anyone of us and we should help each other instead of closing doors to lifelong friends.

Medical Student, Uganda What a shame, sorrow, and sadness of everyday. I am a medical student, and my sibling is HIV positive. It is always hard for me to understand and live with my sibling. Whenever we study pathology and HIV is brought up, it always reminds me of my brother.

He is always depressed, never ambitious of anything. Because I am older than him, I always try to counsel him, but it is hard for me as well. I tell you this although I know that you can’t help me but I have read in books that letting your inner-self out relieves pain. It is really hard for me and the family at large because we keep it as a secret, we don’t want to be stigmatised.

I am struggling everyday. We always protect ourselves from not using sharp instruments he has used at home, but we hide it so that he won’t notice and feel sad. All in all HIV is for real a big burden to our family. I wish no one will know about my story except you.

Ariadne, Panama My first experience with HIV positive patients was really curious. I was involved with an organization that works with HIV positive patients and their families in my country. At first I didn’t know the people that managed this organization, but after they started introducing themselves they told me they were in fact HIV positive patients too. For me that was a shock cause I had a made up image about how a person HIV positive looked like and they didn’t fit into my image. This experience changed my point of view and conception regarding persons living with HIV. Even though I had never saw myself as a discriminating person, I was in fact part of the discriminative society we live in.

Vivi, 32, Hairdresser and TransgeenderActivitst, Brazil I grew up and lived knowing that this body wasn’t mine. That my life in the Brazilian “gaucho” culture was far from accepted. That there are still societies, doctors that don’t want to touch me. That the life´s runway is not a place for a Trans person, even a lot less when he/she in HIV positive and a lot less when we come from low social classes, from the favelas, the dirt. I was detained in 2003 by crack manipulation. The (masculine) prison resulted to be a place where I found more freedom than before (but to be clear, that is not the reality for the majority), I had my protected space, my husband. I was without physical freedom but my ideas were free, my screams were free. Now that I’m out the only thing that I’m certain about is that once my body and my thoughts are free my being is the most powerful political manifestation that can exist in today’s Brazilian society. Strength to all the female warriors.

Medical Student, Indosnesia My life changed after joining SCORA in my country, I now see HIV/AIDS in a different perspective and light compared to what I did before, the subject is really close to me.

I witnessed how everybody is at risk of contracting HIV without necessarily having to be a riskgroup. During my internship in UNAIDS, I realized that HIV/AIDS is a national urgency. I also gained insight in how HIV can affect an individual’s mental health, the difficulties some people have when facing social discriminations and acceptance, and I feel amazed on how government and NGOs put such huge effort to eradicate the epidemic.

However, in my country, talking about sexual and reproductive health is taboo, hence to talk about HIV to my colleagues is hard, and even harder to talk about it to a younger audience such as high school students. People believe that talking about it is inappropriate while in the reality, it is important to be talked about so that any information regarding this matter won’t be misleading. It is important to know and be aware of your body, aware of the effect

of unprotected sex.

I am inspired to work around this matter because it is a passion for me. I would like to use the power as medical student when sharing with society that people living with HIV are not dangerous. The parent role to give HIV/AIDS education as a part of a childhood knowledge is also important.

In my country, to prevent sexual activity during holy month, there were recommendation to eradicate condoms from supermarkets. I don’t agree with this, to promote condoms is not the same as promoting sex, as condoms could provide protection and prevention for STIs. I am glad to know that my NMO and my surroundings actively take part and work towards giving support around HIV, and hopefully in the future, we could achieve the goal of lowering the number of people affected.

Dr. Raju Manghani, India During my clinical career in medicine I have often come across many HIV Patients who come from different socioeconomic strata and vulnerable communities. When it comes to sex workers, many risk their life by engaging in unprotected sex and having multiple sexual partners. Many of them despite being told time and again do not get tested and fail to keep up with medical check ups/treatment as well.

There is also a high amount of depression in patients due to the stigma prevalent in society for HIV/AIDS. Sexual Health is something that has been a taboo for ages and needs tremendous importance. I would thus like to remind all future doctors that how important is the goal to end AIDS. We should focus on better prevention and awareness modules, safe sex advocacy and importance to vulnerable communities. An important part here would also be to target mother to child transmission and curb the same. We need a practicum where each and every person should be told the importance of getting tested and ART. This World AIDS Day, let’s all come together to work towards ending AIDS , ending the stigma and also ensuring equality and health care availability for HIV positive patients.

Take Home Message: Say yes to Safe Sex. Always use a condom. Let no one get affected due to ignorance.

Carlos, 21, Medical Student When I entered med school, I was confident

so is Duda because I passed “it” to her. My

that I was going to find a place of clinical

blood flow augmented and started sweating. M

understanding about AIDS, numbers, and

started crying. I really didn’t know what to tell

amazing facts and how science will be present

her that moment. I just hugged her. “Sarah has

for the rest of my life. That happened until the

AIDS now,” she said. A bomb fell inside me.

day I met M. I was in my third semester, taking

“I honestly know nothing about the disease

my semiology class. I had an assignment to

or anything about medicine at this point but

take medical history of any patient I wanted.

thank you for sharing this with me” I said and

Naturally, I went to the pediatrics department

stared to seek for body language that evidenced

(you know, to cheer up my day from happy

anger to exit the room. Sarah takes the teddy

vibes from little kids). I chose Duda, a girl from

bear and throws it at me. She laughs, Duda’s

the countryside that was in the hospital because

laughter definitely makes M much happier. I

she had seizures and AIDS. I then decided to

laughed as well, although my teachers tell me

enter the room, took a deep breath (first time

not to the whole time.

talking to a patient ever) and opened the door.

M hugged me back. “I feel lonely”, she said.

I entered the room and nervously smiled at M,

“She feels lonely when I’m sick” Duda said. I

Duda´s mom. I rapidly starting looking at the drawing in the walls for M not to think I was a newbie at this. I then looked at Duda; she was a beautiful girl, dark skin like mine with green eyes and pink clothes. I greeted M and Duda, introduced myself and started asking a bunch of questions just as I have rehearsed from the books. Duda´s face immediately lit up with boredom, naturally. M continued answering; while Sarah grabbed a teddy bear and put it on her forehead not to see me. M: “I think she is ashamed”, I responded: she shouldn´t be, M: not because of her, but because of me, I responded: how come? You seem to be a good mother to her, M sighed… I am HIV + and

had an idea. How about a game? Duda and M agreed. The rest of my interview annotations were full of crayon scribbles, glitter and possible mermaid names to start an underwater kingdom.

I really don’t know how it is to live with HIV or if I’m supposed to know how to take guilt and sadness from people as a future doctor. I definitely knew that in that moment I wouldn’t like to feel lonely, not in that situation. I visited Duda 2 more times before she left in October that year. She didn´t made me a better doctor or a better person. I just saw the world with brand new eyes.

Maria Julietta, 41, Mother I will never know if my husband cheated at me.

never let you see good things in life. Yes, I’m

I found I had HIV after he died. Everything

ill but I’ve never tasted life like I do now. I´m

happened so fast. He already was weak

definitely a better person. And yes, I saw my

because of a kidney transplant in 1996. He

kids graduate. Currently waiting for my eldest

was really handsome and I always say it was his

son to find a girl for him to love.

traditional Brazilian smile that took my heart.

Thank you for this space to tell my story. Good

We were having lunch in the summer close to the Guaiba River in 2008, it was a really hot day. He fainted after complaining of strong headaches, I called the ambulance. He was taken to the hospital to the ICU. He died 46h later because of neurotoxoplasmosis. They tested me too, then I found out I was HIV positive. I remember to have a burning feeling in the chest of anger. Julio died that day, but he wasn’t alone, the truth died together with him.

What will I tell my kids now? Will I live enough to see them grow up? Get married?

I mourned Julio for 6 months, with questions in my mind all the time. It still lasted 2 or 3 months to start getting treated. My life was falling into pieces just as it happens in soap operas. Bracing myself as a human probably was the key to deal with the pain. Accepting that it all was an accident, I doubt my husband wished for me to have the virus. For all I know he didn´t knew he had the virus as well, that is why it evolved into the syndrome so fast. I stopped blaming him or blaming me… The problem of this disease is that you always look to point at someone, blame someone. That will

Luck with your project.

Ronaldo, 26, Sexworker I started in this business because my mother had to go to the doctor. We didn’t have money to cover the chemotherapy sessions. That was when I was 14. I am a heterosexual man, although most of my clients are men. I am HIV+. I didn’t follow mi contagion line because I knew one day I was going to get it anyway. I was diagnosed at 19, I remember the look at the doctor’s face. You know? Like when someone really judges you for your life, your actions, some decisions. I didn’t even open the envelope when he said: “you need treatment”, I didn’t want to cry or anything, I just responded “give me the pills then”. So he did, I left the office. I was never the smart guy but I know how to take care of myself. I learned the hard way. Please take care of each other.

Peace and Love.

Fisherman, Kenya I am a 45 years old male, living in Kenya in Suba Village. I was a fisherman by profession, but since 2010 I am factory worker and work for Mumias Sugar company as machine maintenance and store manager. I have one wife and 3 children (1 boy and 2 girls). I am known to have been HIV positive for about 10 years as I got diagnosed with HIV in June 2006. At that time in my village, family and society along with my work place as a fisherman I have had to face social stigma and those who were my family, close friends looked at me with a point of view of disgrace, and disappointment. The church I used to attend and the pastor himself made other people and friends against me, because the village was small and it’s consisted of a close group of people.

After 1 year I started drinking alcohol and turned into an alcoholic and ruined my family and life because my wife and kids weren’t supportive of me. Eventually I stopped drinking and started working hard as fisherman again, I prayed to God and to my family for forgiveness as well. Later on after 1 year my family and kids realized that I had realized my mistake and was responsible enough to carry out my parental duties as well as family duties. After realizing that we still were facing stigma from our village members my family and I decided to move out and go to a new town where no one recognized me. I made good friends and got a job in mumias sugar factory as a store manager and after learning from the mechanics and engineers I later became also machine maintenance man for the gas fume chamber of the factory.

I went to Kisumu District Hospital 2 weeks ago for diarrhea and anal discharge and after helping me out with my treatment I left the hospital today and I am going back home with my wife who came with me here for support. I have hope that I will live the whole rest of my life.

Young Doctor, India When you have a guide like Dr. Alaka Deshpande, you are obviously going to be inclined towards that topic. Luckily, she was my mentor in the 9th semester of my MBBS tenure at MGM Medical College, Navi Mumbai, India and my proclivity towards HIV & AIDS topic was nurtured. During my internship, I came across many HIV patients and to be honest, I was not only scared in collecting blood samples but even suturing them. Here, seniors played a very important role. They helped me in eradicating my phobia by teaching me of how to take proper precautions. I used to have a contact with at least one HIV patient a week during my internship and hence, I could empathize on the emotional stress what they are going through. During my conversation, most of them were very depressed. Many complained that they were neglected or even left alone by their families. Many even tried to hide their status due to the fear of isolation and ostracism. In few areas, people even think that if you conduct some sin, god will punish you with HIV. Many who share their statuses are not even allowed to visit temples and often displaced to some NGO’s away from their family. They not only lose their jobs, but also motivation to live their lives. Thus, HIV is still considered as a stigma and hence, unless we find a cure, this stigma isn’t going anywhere.

Due to my interest, I thus conducted a study to assess the awareness of HIV in slum areas of Mumbai, India which showed a substantial increase in awareness as compared to the last decade It was indeed a good sign, that people are becoming aware of the fact and are using precautions to safeguard themselves and others.

With the advent of Antiretroviral Treatment drugs, now a HIV positive patient can lead a healthy life just like anyone else. However, HIV is still spreading like wildfire and hence, it is of utmost importance that we bring an end to its spread through researches and studies. One such possible way which I recently wrote a review article is through “Genetic Modulation therapy through stem cell transplantation”. It may open the door through which we can end the spread of HIV and fulfil the dream of UN which aims to eliminate HIV by 2030.

Take Home Message: Take proper precautions get tested always. Engage only in safe sex.

Be humble with HIV patients and help in eradicating HIV. Varshil Mehta, MBBS, Observer, Department of Cardiology, Mount Sinai Hospital, New York.

Professor of Pediatrics, Thailand In the past, AIDS was a fear deeply rooted in the conscious of the Thai people and discrimination against PLHIV was prevalent.

Nowadays, medical knowledge is disseminated to equip people with correct understanding of the disease, resulting in significant improvement in Thais’ perspective towards the patients in the past 10 to 20 years. The disease becomes less severe and controllable. Fewer patients are neglected, and they can now live in the society like a normal person. However, some stigma remain. Reports of PLHIV being dismissed from their school or workplace can still be seen. Also, if the patients were skinny or scarred all over their body, would they still be discriminated?

From my experience, those close to the patients have better attitudes towards them.

They are more caring and empathizing than others. Therefore, we should give the society a chance to understand PLHIV through direct interaction, not only through medical information because facts and statistics alone cannot change people’s behavior. We also need the media to improve people’s knowledge and attitude.

The good side of HIV infection is that, if the patients correctly follow the treatment regimen, the complications are less common compared

to other diseases. The problems of PLHIV are family problems and constant rejection from the society, an obstacle that some patients cannot overcome. For example, a mother, out of fear from rejection, kept her disease a secret from her children. In most of the cases like this, there are positive responses from the children after telling the truth. Though they may be sad at first, the children will become more understanding as time goes by.

In many situations, the rights of PLHIV are not equal as the general public. For example, people with HIV are instantly discharged from the military. The important problem now is how to stop discrimination against PLHIV both in schools and in workplaces. These people don’t want to be stigmatized or even be pitied, because that will only make them more different from others. They want to be understood and the most of all, to have their confidentiality respected. This is the reason behind the Thai Red Cross Anonymous Clinic, which provides blood test and consulting without recording the patient’s information.

The institution Care for HIV patient in Thailand is among the best in Asia. We provide academic support to multiple countries and host the HIV Symposium every year.

Franklin, Costa Rica My name is Frankiln. In 1996 I was 36 years old. To know if I had HIV I had to wait two weeks for the results, after that, I was sent to the San Juan de Dios hospital, with the confirmed diagnosis by a Western Blot test. Seven months after my first appointment, my CD4 count was low but there was no medication and the uncertainty and doubts passed through my mind depressing me and thinking about my death and in the stress of thinking who to tell this. I started to trust and tell to my friends, which was the first situation of DISCRIMINATION and rejection where I was pointed at.

I saw the first associations of people living with HIV in Costa Rica being founded, where I received support of a group of people under my same condition and fought to obtain the retrovirals. At home my family was a hard one, because I didn’t want my parents to suffer, I spoke to my eldest brother, he didn´t gave me support because of my sexual orientation, he made me feel diminished so I talked to friends, some didn’t talked to me again. I was afraid for my profession in the area of Gastronomy, I could lose my job, appointments were frequent, and the exams were the same, two years at death´s shadow, suffering and living daily fears.

Retrovirals arrived and at first we felt the cold and indifferent look of the people that gave us the medication. I received support from my parents who are not here today, my brothers and sister understood that DISCRIMIATION kills, isolates the human being, after several years. Thank you for paying attention to my story so that you take care, get tested, and care for others spreading the teaching of this message.

A New Mother I went to the health center to immunize my

a health worker always refer to my HIV status

baby after six weeks from birth. The health

when she or he supposed to be guiding me to

worker forced me to do family planning, when

take an informed decision? Why should I be

telling her that I was not ready and I have to

forced to enroll to family planning? Why am I

consult my husband before undergoing the

not involved to make a decision about my own

family planning process, she told me that I

health? I still have my own choices and they

should make a quick decision because my

should be respected.

blood is dirty and there are a lot of patients awaiting to be attended to.

I am a woman living with HIV and understanding that I am still a human being, I felt insulted to be reminded that my blood is not clean, is dirty. I had no choice I agreed to family planning and they inserted implant which gave me problems after sometime, I work as a community volunteer and after my paid job I do house chores at home, as a result the implant lost its position. When I went back to the health facility to give them feedback about the implant they told me that I was not supposed to do hard work. By that time I regretted my decision of family planning I did not want to hear anything about it. The nurse suggested that I should choose among the other contraceptive methods, again I had no choice she did not even give me time to think about it I just chose tablets.

It is said that people should all fight stigma and discrimination of any form against people living with HIV, but with HIV positive women is not practical in some instances. Why should

HIV+ Author, Wrote a Book about his Infection & How It Affected his Life I clearly remember when I received my HIV diagnosis. I had been in Berlin for two years without seeing a doctor until I suffered from a general indisposition and abnormal fatigue, that assailed me regularly when working too much. Even a thorough checkup did not show any noticeable problems. So the doctor decided to order complete blood work. When he was about to tap the vein, I turned my head and told him: “Take a drop more and check the HIV status too”. One week after I went to see the doctor again. He looked at me for a while, before he asked: “Why did you want to know your HIV status?” “I am part of a risk group”, was my short answer. The doctor took off his glasses, rubbed his eyes and again looked at me with that glance that already told me what he was going to reveal. “You just get to know someone – and the first thing you have to do is to advise him of such a diagnosis”, he said in a low voice. It was obvious that he did not want to say the word out loud. When the initial shock was over, I tried to deal with the situation. Starting with treatment means suddenly feeding the body with agents it is not used to. Stomach problems, headaches and indigestion are daily occurrences; much worse is the diarrhea, especially when it comes without warning. I remember days when I had to plan trips around Berlin very carefully to ensure a public or private toilet could be found at short notice. But there

is more: abnormal fatigue, lightheadedness and insomnia. Sometimes neuralgia in arms and legs occurs; a dysfunction of the lipid metabolism up to lipodystrophy may cause fatty tissue to shift from the face, arms or legs to the abdomen and/or neck. Treatment has effects on the psyche, too. Starting treatment means the psychological battle has been lost.

This is a dramatic milestone, probably even more dramatic than the diagnosis itself. I have met quite a few people who showed changes in personality after starting treatment. They made decisions nobody could understand or ended long friendships without reason. I had friends who had run an open house, parties, game nights, Sunday afternoon cheesecake teatime, but when both of them had to start treatment, they literally closed the doors and windows. Others, who were real workaholics and loved their profession, suddenly decided to quit and live on a disability pension. If I met a person who has just been diagnosed with the virus, I’d tell him: Accept the situation, even if it feels like a punch in the gut – because you will not be able to change the situation by grumbling. A positive test result is like a restart of one’s life, but not necessarily for the worse.

Look forward, develop life plans, celebrate friendships, and never use HIV as an excuse for life. Every HIV-positive person should know that he or she is not alone – life goes on.

Woman, 73, Brother Died of AIDS My brother used to be very anxious. Once he got infected with syphilis, his biggest fear was that it would reveal his homosexuality. Since he worked as a lawyer in a governmental office the fear was overwhelming that someone could find out that he was gay and he would lose his job or bullying would follow the coming-out. Later, when he received the HIV diagnosis, he never talked about it at his workplace and worked as long as he possibly could. There were two hospitals that specialised on HIV and AIDS but he didn’t go there because they were located too close to the city center and he didn’t want to be seen. Only me, my sister, my mother and some very close friends knew about the diagnosis. We didn’t talk to anybody about it. Even on his funeral we lied to our family members about the cause of his death. We told everyone it was a meningitis which was only half true. The people on his funeral were literally divided into two groups: the few who knew why he died and the others who were told the lie. The priest didn’t tell the truth either, AIDS was very much tainted with shame and sin at that time, and still is. The boyfriend of my brother cared for him through his illness and in deathbed.

He could barely cope with my brother’s death and became very sick. He couldn’t live with the idea that his partner died of this torturing disease and he stayed healthy. A few years later he took his own life. It is so important that people diagnosed with HIV get professional psychological support and that this help includes the family, the partner, the close environment. Today a HIV diagnosis is not a death sentence anymore. HIV became a chronical disease which when treated properly is not infectious. Still the fear of an infection and social exclusion overshadows what is medically possible to prevent and treat an HIV infection. We need more widely spread knowledge on transmission, on treatment and on the social situation people diagnosed with HIV find themselves in. It’s the uncertainty about the future and the fear of being judged, of being excluded at work or from a group of friends and the feeling to be treated as a different person that makes the diagnosis so difficult today.

Joy, Kenya Joy is very much aware of “things”, over the years this is the key lesson she has picked. “I have watched my whole family die,” she says, “I am not afraid of death, it’s living that scares me.” The first born in a family of four she is the only surviving member. She adored her parents and loved her siblings dearly but she had been too young to understand the things that tore her family apart.

Her father had cheated on her mother on countless occasions and had contracted AIDS as a result. Oblivious of his condition, they had had 3 more children: twin boys and a girl who were all infected with HIV. It wasn’t their choice, they didn’t get to choose to be born with the infection and they weren’t the ones who were unfaithful. Why do children have to pay for the sins of their parents?

Joy watched as her mother broken and beat down faded away and retired to her corner. She didn’t speak much anymore. She would never get to see her daughters grow to be women of substance and her sons to be men. She had died a bitter death, she would never forgive her husband. After her mother’s death Joy became the parent in the family since her father didn’t really care about anything anymore. The guilt and the disease had worn him down and he had grown to resemble an old grizzled man. He didn’t live long after that.

Joy had wept the death of her parents, she didn’t know what to do anymore. She was just a child, how was she to bear all this? Soon after, her youngest sister who was lost and hopeless of her situation, drunk poison and died and as fate would have it her 2 brothers followed in the same year; their immunity had been too low. I watch as Joy stares into space. Her eyes have frozen over like the surface of a winter puddle robbing them of their usual warmth.

She’s in there, I can tell, but it’s like she just took a huge step back from life. I want to reach in and tell her it isn’t hopeless but what do I know? I want to rekindle her heat, but her insides are too damp with uncried tears.

“At the end of the day there are some things you can’t help but talk about,” she says, “some things we don’t want to hear but of some things we can’t be silent any longer. Had my father had the audacity to admit his wrongs all this could have been avoided. Besides being faithful, people should own up to their mistakes, they shouldn’t drag others down with them.”

Today, Joy is married, a mother of two. She always encourages dialogue with her husband because she knows what lack of dialogue can do. She has liaised with her church and holds talks to couples emphasizing on faithfulness and dialogue. She will not let anyone relive her story.

Female, 29, Texas, USA, Telephone Interview Q: Thank you so much for agreeing to share your experience with me and others. It means so much. So, you are adopted?

A: Yes, I was adopted at birth. My adopted mom told me that my birth mother and my father died of AIDS. Q: Really? Do you recall that moment when she told you? How old were you?

A: I found out in high school. Before, I had so many questions about why I was left in the hospital [as a baby], but now it makes sense because they were on drugs. My mom wanted me to live as normal of a life as possible, so she didn’t tell me until she felt like I could understand. My birth mom left me in the hospital because she was still doing drugs while she was pregnant. She didn’t want to go to jail, so after I was born, she left and no one could find her. Soon after, she and my dad died of AIDS [related complications].

Q: Has your view on HIV/AIDS changed since finding out, if so in what ways?

A: I know that it’s not a curable disease. Since finding out, I’m more careful about the men that I date and how I live my life. I’m more grateful. I try to live a life pleasing to God. I know that I have a purpose. I know that I’m not invincible and if I make wrong decisions I could end up like them.

Q: Okay. In your opinion, what ways could family members or friends help to support people with HIV/AIDS? A: Well… continue to have a relationship with the individual… don’t change. People living with HIV need a lot of support. They need to know that they are still loveable. They need to know that they will not be thrown away.

Q: Have you told people about your story?

Q: Wow, and how did you feel after finding out about your birth parents?

A: Yes.

A: Once I found out, I was relieved to have been born healthy with an HIV negative status.

A: I’m blessed. They always tell me that I’m lucky.

Q: Now that you’re older, what do you think about the significance of them dying of AIDS?

Q: Have you ever felt stigmatized?

A: I mean… I feel lucky that I wasn’t born with HIV. I could have been though. They were doing drugs. Back then, in California, drugs were really popular. They were living really recklessly.

Q: Are you angry with them?

A: No. I’m not angry. God has a purpose for everyone and everything.

Q: What were their reactions?

A: No, I have not never felt stigma because of I wasn’t born with HIV. It hasn’t really affected me.

Q: You don’t think that you’ve been affected?

A: No. I have a good life.

Thank you!

A big thank you to all the amazing brave souls who shared their stories with us! We want you to know how powerful and vital tool your voice is in helping increasing understanding and making society more equal and accepting for everyone. Together we can touch hearts and change minds all over the world. Another special thank you to all the SCORAngels who has worked vigorously in helping us collect these stories.

Lots of love!

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