Resource Logo
New Vision

Uganda: I Did Not Know I Had HIV Until I Was 14




 

Nintey percent of young people today living with HIV got it through mother-to-child transmission. For fear of stigma many keep their status a secret

The hard slap across her face got her ears ringing. She did not hear all the insults her tormentor threw at her, in full view and in the hearing of her classmates. On returning to school five weeks later, to write her exams, 18-year-old Angella Sengendo noticed something odd: Everyone seemed to tip toe around her, their faces a mixture of fear, pity and disgust, save for her three close friends, who were privy to her condition.

One of these friends explained to her why. "On that day the teacher slapped you; she shouted that she pitied your father because you are a burden, being HIV-positive and that you should consider yourself lucky to be in school!"

Sengendo, now 20 years old, still reels in anger as to why a teacher she and her father had trusted to keep silent about her status, had betrayed her.

At the age of six, her parent's fuss over her made her realise she was different. "I was not like my sister and cousins. At family gatherings, I was the only one wrapped in ill-fitting thick sweaters and scarves when it got cold," she quietly says, with a faraway look in her eyes. If she so much as coughed slightly, that was the end of the party for her.

She would be rushed to the clinic as her agemates stayed behind to play.

"I started to hate the word hospital, because it meant returning home with lots of tablets and syrups. A week never went by without a visit to my uncle's hospital," she says.

Sengendo was not the curious type, so she never asked her parents about it.

At Kampala Junior Academy, despite the tons of medicines she had to take at home, school was fun. "The teachers were friendly and I made friends whose company I immensely enjoyed. I even took up swimming and I was a star.

One cold morning, during a lesson, in P7, she suddenly felt ill. "I could not continue writing. I must have looked really sick because the teacher walked up to my desk and in a whisper asked whether I was fine."

Before long, her father was driving her to hospital. She had developed asthma. It meant more drugs, but something else took her smile away.

"I was advised to stop swimming, yet I loved it."

At secondary school, life began to throw lemons at her. "First were the questions I never had answers to: How come your cough never goes away? Why do you often go home?'" she narrates.

The school was located in a swampy area, so the damp conditions aggrevated her condition. Almost every three weeks, she was taken home ill.

In S2, students started talking. She would see them in small groups, perhaps trying to get answers to the questions she never responded to.

Sengendo became reserved. The school matron was the icing on the already bitter cake.

"She was really mean to me, especially when I returned from home. 'What sort of disease are you suffering from?' she would shout, embarrassing me," Sengendo narrates. Even when the questions grew louder, Sengendo never put her parents to task for answers.

"One day, my mother picked me from school. This time however, we headed to an unfamiliar hospital. She explained to me that previously, I was attending a children's hospital but because I was now grown, I had to attend one for adults. I later learnt it was the Joint Clinical Research Center (JCRC). I remember walking in with my mother and seeing a crowded place with sick looking people, some in wheel chairs."

Sengendo narrates that whenever she and her mother visited JCRC, some tests were run on her, then her mother would enter a room and leave her waiting outside.

"When she came out, we would hurriedly walk to my father's car. It's like they never wanted anyone to know we were there."

On one of those trips, Sengendo got into the car and sat, while her parents discussed something in hushed tones. "I saw papers on the front car seat. One of them read HIV-positive. Then, I was 14. I knew what HIV was, so I wondered whether it was me or my mother who had it."

Sengendo still could not find it in her to ask her parents who was HIV-positive.

In the third term holidays, seated between her parents on the verandah at home one evening, they broke the news to her.

"They said my immunity was low and not like other children's, and that I needed to take vitamins. It was a blow, what I had been suspecting for a while was true. They said I had got it at birth. My mother had been involved in an accident and had had a blood transfusion.

Sengendo asked about her younger sister. She was told that because by the time her mother was pregnant, she was already aware of her HIV-positive status, necessary precautions were taken and so she was negative.

"Even with the bad news, a part of me was glad, that at least, my younger sister would not have to face the trials I was facing," she says.

The following year, she enrolled in another school for S3, but the relief was short-lived.

"A few weeks in the school and I was baptised 'the sickly one'. The one-and-a-half years I spent there was hell. My grades fell and even when I copied the notes of the lessons I had missed, it was not enough for me to catch up," she says.

As if that was not enough, she developed migraines, which the doctor said were a result of a swollen sinus. Though she responded well to the medication, she had fallen too far behind in her classwork and had to repeat the class in another school. Sengendo was depressed. "I kept asking myself, why me? Why wasn't I like any other teenager? Why was I asked to repeat a class yet it was because of a condition I was born with?" she says.

In the new school, she confided in two of her roommates. "I knew they would soon start asking questions about my on and off sickness. I just had to tell them, although my mother did not want me to do so. My father, on the other hand, encouraged me to."

Fortunately, the girls were sympathetic. They accepted her and helped her when she fell sick.

Her face brightens up as she says: "It was the first boarding school where I felt comfortable. I had fun and started swimming again. The administration knew about my condition and was caring."

Towards her O'level exams, the migraines struck again. "I spent the night awake, saying to myself there was no way I was going to repeat another year. The administration was concerned. My father took me away for treatment and fortunately I was able to return in time."

She managed to complete her exams without any other incidents. "The administration of the school was so happy for me and promised to enroll me for A'level." However, the school's policy on corporal punishment for wrong doers made her opt for another school, so she enrolled at a different school.

At the new school, the director of studies and school matron made her prefect because then she would be exempted from housework and punishments.

"The school was different from all the others I had been to. It was an interesting life, from letting us grow hair, to attending dances and allowing a cool dress code" Sengendo remembers. She opened up to three of her friends about her condition. They became close friends and none of them ever breathed a word of it to anyone. Sadly, Shortly afterwards, her mother passed way.

Five weeks to the A'level exams, Sengendo was seated close to a group of angry girls, who had earlier been told by the director of studies to leave their dormitories. They were not happy.

Being in a group, they hurled insults at the director, knowing she would not be able to tell who exactly had done so.

"The school matron heard and walked in the direction. Unfortunately, I was seated near to these girls. When the matron reported the matter to the director of studies, it is only me who was singled out. I was summoned to her office.

She did not wait for me to get in. She met me at the verandah and started hurling insults at me, even when I tried to defend myself."

The office was in a quadrangle, so when the other students heard, they gathered on the other verandahs to watch.

"The other girls tried to tell her that I was innocent, but she would not listen. She slapped me hard and continued yelling. The ringing in my ears was so loud, I could not hear what she was saying," Sengendo narrates.

Sengendo was handed an expulsion letter. She called her father.

"I had never seen him so angry. We went back the following day and the teacher told her side of the story, insisting I was guilty. She said all she would allow me do was return for exams."

She says the five weeks she spent at home were hell. The anger in her would not let her concentrate on her studies. To make matters worse, her father blamed her.

"There was no one at home I could confide in. The only person who encouraged me was my counsellor at the hospital from where I got my ARVs."

By the time she returned to sit her exams, the whole school knew she was HIV-positive. "I felt like I was suffocating in the school. Thankfully, my friends who had always known my status did not change their attitude towards me," Sengendo says.

To add insult to injury, both the matron and director of studies were in charge of checking the girls for any cheating material before they got into the exam room.

"Each time I saw them, a flash of the incident would go through my mind and I would get so angry that I did not care what I wrote."

When the results were released, she had scored only two points. She blames the school's director of studies and the matron for her failure.

She says the top administration in different schools should take note of and punish those guilty of stigmatising HIV-positive students.

"This should be taken seriously because the way you treat students affects them negatively. I am not the first and will not be the last to face stigma unless there is change."

She believes that schools should leave it to the student to decide whether or not to disclose to their status.

Five weeks to the A'level exams, Sengendo was seated close to a group of angry girls, who had earlier been told by the director of studies to leave their dormitories. They were not happy.

Being in a group, they hurled insults at the director, knowing she would not be able to tell who exactly had done so.

"The school matron heard and walked in the direction. Unfortunately, I was seated near to these girls. When the matron reported the matter to the director of studies, it is only me who was singled out.

I was summoned to her office. She did not wait for me to get in. She met me at the verandah and started hurling insults at me, even when I tried to defend myself."

The office was in a quadrangle, so when the other students heard, they gathered on the other verandahs to watch.

"The other girls tried to tell her that I was innocent, but she would not listen. She slapped me hard and continued yelling. The ringing in my ears was so loud, I could not hear what she was saying," Sengendo narrates.

Sengendo was handed an expulsion letter. She called her father.

"I had never seen him so angry. We went back the following day and the teacher told her side of the story, insisting I was guilty. She said all she would allow me do was return for exams."

She says the five weeks she spent at home were hell. The anger in her would not let her concentrate on her studies. To make matters worse, her father blamed her.

"There was no one at home I could confide in. The only person who encouraged me was my counsellor at the hospital from where I got my ARVs."

By the time she returned to sit her exams, the whole school knew she was HIV-positive. "I felt like I was suffocating in the school. Thankfully, my friends who had always known my status did not change their attitude towards me," Sengendo says.

To add insult to injury, both the matron and director of studies were in charge of checking the girls for any cheating material before they got into the exam room.

"Each time I saw them, a flash of the incident would go through my mind and I would get so angry that I did not care what I wrote."

When the results were released, she had scored only two points. She blames the school's director of studies and the matron for her failure.

She says the top administration in different schools should take note of and punish those guilty of stigmatising HIV-positive students.

"This should be taken seriously because the way you treat students affects them negatively. I am not the first and will not be the last to face stigma unless there is change."

She believes that schools should leave it to the student to decide whether or not to disclose to their status.



 


All articles are republished on AEGIS by permission. Material may not be redistributed, posted to any other location, published or used for broadcast without written authorization from Managing Director/Editor-in-chief, The New Vision, P.O. Box 9815, Kampala - Uganda, Tel/fax: 256-41-235221, E-mail: wpike@newvision.co.ug 



Information in this article was accurate in September 26, 2012. The state of the art may have changed since the publication date. This material is designed to support, not replace, the relationship that exists between you and your doctor. Always discuss treatment options with a doctor who specializes in treating HIV.