“I don’t want to die.” | HIV Positive Youth | Social & Physical Struggles | Uganda

MACLEEN KABUGHO
Age 12
(see end of this article for her story)

 

Photojournalist Carol Allen-Storey is the Edge of Humanity Magazine contributor of this documentary photography.  From her project Teens and the Loneliness of AIDSTo see Carol’s body of work click on any photograph.

 

AIDS continues to be a disease feared but not understood as education is sparse and the medical Councillors administering the drugs emphasize the peril of the disease being a death sentence to ensure the drugs are taken rather than widening the general knowledge of those infected.
In Sub-Saharan Africa the growth of teens contracting the AIDS virus is growing exponentially, especially in rural regions where many women do not access the mother to child prevention drugs because they birth at home and not in hospitals. Their behavior has resulted in a teen epidemic of AIDS. The most significant challenge these innocents face is loneliness, stigma, and isolation; they find it impossible to make friends.
These intimate portraits focus on how teens cope with their experience of being HIV positive. Amidst these chilling narratives, extraordinary stories of hope and glimpses of heroism in their quest to pursue their dreams emerged.

 

 

“As long as I can remember at a young age, I was continuously falling ill, but my aunt would not
seek medical care. Finally when I was 7, I walked to a local clinic I knew about to see a doctor. After
a simple examination, he took me to the Kilembe Mines Hospital AIDS clinic to have further tests.
Before the tests were undertaken, the staff counseled me about what AIDS was since I was never
told about the disease. I was diagnosed being HIV positive and started a course of the ARV drugs,
which I have been on for the last 10 years.
After I discovered that my mother died of AIDS, I went to my older brother to find out the full
story about what AIDS is and how it affected our family.
The only knowledge I have about the virus I learned from the clinic because it has not been taught
in school. The clinic taught how the AIDS virus is transmitted and how you can prevent acquiring
the disease. I learned that it is mostly contracted from sexual transmission and needles. I am
sexually active and my girlfriend is also HIV positive. We do not have protected sex because we
weren’t warned that, even if you are HIV positive, you still need to use protection as without it, the
disease can become more virile.
My visit to the AIDS clinic is monthly for the staff to monitor my condition and dispense the
antiretroviral drugs – I know I will die if I don’t stay with the drug programme so I am very careful
about rigorously taking the drugs. I don’t want to die.”

AMZA MBUSA
Age 18
AIDS orphan

 

An HIV/AIDS orphan since he was three after both parents died of the virus; he has been living
with his aunt in a rented room which is part of a soulless cement block of houses. The block of
homes is littered with rubbish and the scent of poverty hangs heavy in the air.

June 16, 2014
Nyamwamba, Uganda

 

 

“We go to the hospital to have our blood tested,
but we do not know why – only that the drugs we do get
must be adhered for a healthy life or we can die.”

SCOVIA MBAMBU
Age 12

 

These are words religiously whispered by teenager Scovia as she takes her daily dosage of the ARV life saving drugs.  Scovia suffers from AIDS. She has very little knowledge of the virus. Because of the lack of funds
for fees, she rarely attends school. In fact Scovia cannot describe what AIDS is. The only thing in
her mind set is if she does not take the drugs daily, she will die. She does not understand the
concept of ‘stigma’, because she has been advised by her parents to never talk about her status to
anyone, to keep it a secret. Only at the clinic, where other children are infected can she talk freely.

17th June 2014
Kasese, Uganda

 

 

“Two years ago I had to leave school as there was no money for the fees … at the same time I was
also diagnosed as HIV positive. Although I had to leave school, I am fortunate that my aunt, who is
a tailor, is teaching me the trade.
AIDS is not something I know very much about. Most of the time it is discussed in whispers
around my village. Since I was diagnosed, my aunt has warned me never to have sex, as men will
not treat me well. So I don’t get involved with men. Only the people I live with do I disclose my
HIV status – that way I avoid stigma and the sense of shame, which is very depressing.
Counseling has been exceptionally helpful in managing my sense of isolation, and especially the
loneliness. But, I still do not reveal to new friends my status. Sadly, Marriage is not in my future, as
I do not want to infect anyone.”

PRICILLA KABUSINGE
Age, 18
AIDS orphan

 

Pricilla support her aunt by baby sitting her cousin during the day whilst she is away working.

19th June 2014
Kilembe Quarters, Uganda

 

 

“Six years ago my mother took me to the AIDS clinic where I was diagnosed as HIV positive –
since then I have been on the drugs. My mother birthed me at home, so never received the mother
to child prevention medication even though she was aware of her status and it was probable she
would pass the disease down to me. AIDS is an indiscriminate killer – everyone knows that even
though there is no AIDS education at school. What little I do know about the virus I learned from
the clinic counselors.
It is virtually impossible to reveal your status as there will be immediate abandonment.
I do have one friend who is caring and does not isolate me which is very unusual. Most of my
friends are those I meet at the Kilembe AIDS clinic – we are relaxed with one another.
My biggest challenge is accessing the drugs; as you can see my mother is very ill, she can’t work and
is too weak to escort me to hospital …we have no carfare money. I am in great fear that I, too will
become ill because I am no longer on the drugs.
My dream is to become a lawyer to champion women’s rights. With a respected profession I will
earn money, not have poverty, and perhaps help my Mum if she survives.”

ANGELA KYOBWENGYE
Age 12

 

Angela wept as we conducted the interview … tears streamed down her delicate face … Tears of
despair, as she shared with us her pain. Her dad had died 6 months earlier; her Mum was now in
stage 4 of the AIDS disease and would die very soon. Their home would be lost and, they would be
thrown out by the landlord today because they had not paid the meager sum of 15,000
Ugandan shillings a month (roughly $6.00 per month for a year)… their total owing was $72.00.
Their ‘house’ is a suffocating concrete airless cell no larger than 2 x 2 metres. Poverty is the villain
before illness.

June 16, 2014
Nyamwamba, Uganda

 

 

“My mother told me about AIDS, but what I know is very limited, except if our family doesn’t take
the drugs we will all die, because we are all HIV positive.
The drugs create extreme hunger and with our poverty, it is difficult to have a nutritional diet that
will help us manage the after effects of taking the drugs. I have no friends except a few that I meet
at the AIDS clinic where we can be open with one another – otherwise we are isolated and the
stigma makes me feel sad because I didn’t get AIDS because I was naughty.
Three years ago I had to leave school, as there was no money to pay for my fees and supplies.
Because of my limited education, training and age; it is virtually impossible for me to find a job.
I hope to find a way to continue my education and train as a policeman because I have observed
that many people break road laws. Many children are killed by reckless driving – I want to eliminate
road killings and make roads safe.”

EMMANUEL MUGAWE
Age 16

 

Emmanuel is a teen AIDS victim. He lives with his mother and siblings in a tiny shared room; their
home. His mother who wasn’t aware during her pregnancy she was HIV positive; birthed at home
and therefore did not receive the mother to child prevention medication. All of her children are
HIV positive. She struggles to keep the family together with the meagre wages she earns from
small jobs.

June 11, 2014
Kisanga, Uganda

 

 

“I was forced to leave school a year ago because there were no funds to continue my education.
I was hoping to study law, it is my dream – especially training as a criminal lawyer for the
prosecution. I haven’t given up hope that I will be able to secure funds and follow my dream.
My knowledge of AIDS is small – my mother told me I had the virus but did not explain exactly
what it is. What I know is that the disease is caused by having sex with an infected person and
sharing needles for drugs. Most importantly I know that it is a dangerous killer disease that gives
high fevers, vomiting, skin disease and extreme loss of weight from being ill.
My entire family is on the drugs since 2007 when we were all diagnosed. I am with the drug daily;
it makes me very hungry, and we never have enough food to lessen the hunger knots in my tummy.
I developed an ulcer from the drugs due to my inadequate diet. In spite of the challenges of taking
the drugs I stay with them because I know I will die without them.
Isolation and stigma are my greatest personal problems. As soon as I reveal to a new friend my
status, they abandon me. Now I no longer reveal my status because I know my friend will
walk away.This makes me very sad!
At the HIV/AIDS Clinic I have made friends because we share similar problems and can be open
with one another. We meet once a month at the clinic and also try to meet up on weekends.
It would be great if we had an opportunity to meet more often.”

DOROTHY MANDOBYA
Age 17

 

June 11, 2014
Kisanga, Uganda

 

 

“My parents perished from the AIDS virus when I was only 2 years old – I have no memory of
them. Soon after their death, I developed a horrendous skin disorder, which was diagnosed as an
opportunistic disease associated with the AIDS virus. I do not really understand what AIDS is,
nor how I acquired the disease. Isolation and the lack of friends is a plague on me, I feel lonely
and don’t know how to find friends to accept me.”

GODFREY MIWAMANYA
Age 12
AIDS orphan

 

Both of Godfrey’s parents died from the AIDS virus. Jolly, his aunt has adopted him and he lives with her family. This is typical for the hundreds of thousands of children made orphans from the AIDS pandemic.

June 11, 2014
Kisanga, Uganda

 

 

“Both my parents are HIV positive. Although I have been on the antiretroviral drugs since I was 7,
I only recently found out that I had the AIDS virus and that is why I had to take drugs.
As with many women in this region, my mother birthed at home and therefore had no access to the
mother to child prevention therapy. It was our poverty that prevented her to going to the hospital –
my parents didn’t even have money for transport, let alone any fees from the hospital.
The most frightening thing I know about AIDS is that if I don’t take the drugs, I die! I know if the
virus gets into the blood, it begins the process of destroying the body. At the Kilembe Mines AIDS
Clinic they counseled me not to fear the disease, as the drugs will assist us to live a good life. AIDS
is contracted through sharing of blood, but I know it comes when ‘people are looking for it’ … by
having unprotected sex with partners who are ill with AIDS.
To help youth living with AIDS, I think there should be AIDS CLUBS – where we can enjoy each
other and not worry about revealing our status.
Stigma is not an issue as I never reveal my status to friends … I keep it as a secret so that prevents
being isolated. Hopefully I can find a way to continue my studies as I want to become a nurse and
help save lives.”

CHRISTINE KAKYO
Age 10

 

June 16, 2014
Nyamwamba, Uganda

 

 

“I have been an orphan since I was 7 years old. Both my parents died of AIDS, first my dad 8 years
ago and then my Mum 5 years ago. My mother birthed at home; unaware that she was HIV
positive, which meant I never received the mother to child prevention drugs.
My mother warned me just before she died that if I didn’t take the antiretroviral drugs, that God
will take me as he took my parents which scared me. Whenever I take the drugs I recite …

‘Help me God
As I take these drugs,
Please do care for me
I don’t want to die from AIDS
as my father and Mum have’

Although I have the virus, I continue to be optimistic that a cure will be found soon and I will be
cured and no longer suffer from the disease.
There is no teaching of AIDS at my school. Because of stigma, I keep my status a secret … none of
my friends know I have the virus. I have problems not being able to be open. And, even with my
AIDS friends, we never talk about our status and treatment. We are afraid to be honest with one
another.
I am in the 2nd grade primary school – I should be in a higher grade but have missed school
because of being ill. I plan to be a doctor because I want to help people who are sick and need
medical care.”

INNOCENT MUHEMDA
Age 12
AIDS orphan

 

June 11, 2014
Kasese, Uganda

 

 

MACLEEN KABUGHO (Featured Image)
Age 12

“I only have one friend who is a neighbor, she is also HIV positive. There are no other friends.
if I reveal my status, I learned a long time ago, friends will run away – they make me feel ugly and
unhappy. I didn’t get AIDS because I wanted to; it happened and I don’t know why.
Every day I have to take drugs to prevent my becoming ill. No one has ever explained how I got the
virus and if I will ever be cured.”

 

17th June
Nyamwamba, Uganda

 

 

See also:

Fractured Lives

By Carol Allen-Storey

 

 

 

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