HIV/Aids stigma was a turning point in my life – Nawanyaga

“Have you heard about HIV/Aids? Do you know its causes and symptoms? Are you aware that it is a non-curable disease? What would you do if you found out that you were HIV positive?” On a random Saturday afternoon, Gloria Nawanyaga, who was then 11 years, was bombarded with endless questions related to HIV/Aids.

Although she tactfully dodged these questions, she listened attentively as her mother went on with the lecture on HIV/Aids. Nawanyaga’s mother even cited examples of people who were living with HIV/Aids for many years.

After a lengthy chat, she broke the news to Nawanyaga about her HIV status. This is a secret she had kept from her for 11 years. Nawanyaga learnt that she was HIV positive.   

 “I was devastated. I hated myself. I hated my mother. I started judging my parents. I thought I was going to die because our teachers then told us that everyone who had HIV was going to die” she recounts.

What depressed Nawanyaga more was the fact that she was going to spend the rest of her life taking medication. “I was given assurance that I would live for many years, only if I religiously took my drugs. This is a lifestyle I struggled to adapt to and severally, my parents would force me to take medicine,” she adds.

When she joined boarding school, she knew she had an opportunity to dodge medication. Unfortunately, this came with dire consequences. Her immunity was weakened and this exposed her to several other diseases.

“I contracted malaria, diarrhoea and pneumonia because my viral load was high. People in the village started spreading news about my sickness,” she says.

Stigma sets in

According to www.webmd.com, viral load gives an idea of how much of the HIV virus is in your body. The test measures the number of HIV copies in a milliliter of blood. Keeping the viral load low keeps your immune system healthy, make complications of HIV less likely and helps patients live longer.

 An undetectable viral load makes it less likely to transmit HIV to others. The test results help the doctor to track how well the treatment is working and guide treatment choices.

This stigma traumatised Nawanyaga. She recounts that she struggled with acceptance throughout primary and secondary school. When her classmates found out that she was HIV positive, she thought suicide would solve this problem once and for all.

In the four stages of managing grief which include denial, anger, bargaining, depression and acceptance, Nawanyaga lived in denial for many years. “At a certain point, I refused to go to school,” she adds.

Life at campus

At university, she joined a psychosocial support group called Young Generation Alive (YJA), which belongs to Makerere University – John Hopkins University (MU-JHU). She was introduced to Aids counsellors.

Nawanyaga’s father, who at that time provided for their family, was bed-ridden and could not sustain her financially at university. She could barely afford meals and her coursemate offered her a bed space on condition that she paid part of the rent.

Nawanyaga narrates that at some point, her roommate’s boyfriend visited them and would later pick interest in her (Nawanyaga),  but she turned him down.

“When he learnt that I was HIV positive, he accused me of seducing him. Attempts to explain to her friend these events did not yield any fruits,” she says.

Word spread about Nawanyaga’s HIV status and stigma was thrown to her face both at campus and hostel, which prompted her to run away and seek refuge at a friend’s place.

 Breakthrough

 “I thought people would love, accept and support me for who I am.” she says. Two weeks later, Nawanyaga returned to campus after realising that running away would not change her HIV status.

Her roommate claimed she could not continue living with someone who is HIV positive, adding that she harboured intentions of maliciously infecting her.

Nawanyaga was neglected and during her lonely days, the internet became her friend. She searched for information about HIV/Aids and chanced upon Y Plus Beauty Pageant.

Organised by Uganda Network of Young People Living with HIV, the pageant empowers people living with HIV/Aids to be ambassadors of change. This pageant reinforces that people living with disease have talents like anyone else.

When Nawanyaga contested, she won the competition and was invited to attend the International Aids Conference in Amsterdam.

“I sung during the contest and won. I have Y Plus Music band which I started in 2018 and has performed on national and international platforms on occasions like the World International Aids day,” she says

The cash prize she was given helped her settle part of her tuition fees. From that moment, I gained confidence and I publicly opened up about my HIV status.

The 20-member band has an album of six songs and has touched lives of many Ugandans living with HIV/Aids through songs. Nawanyaga says many young people living with HIV have since joined the beauty pageant.

In 2018, Nawanyaga founded GILO, a charity organisation that equips young people both infected and affected by HIV with skills to improve their livelihoods.

Through community, school outreaches programmes, GILO young positives has mentored about 50,000 persons living with HIV.

The 25-year-old is an entrepreneur that owns a boutique and a restaurant. She was chosen by UNAIDS to represent Uganda communities and has networked with international organisations.

“Every part of my story has shaped me into the person I am today. If all those things did not happen, maybe I may not have been where I am today” Nawanyaga explains.

What  it means to take tabs daily

Speaking about taking ARVs everyday, she says there are many side effects that are associuated with taking medication such as  headaches, stomachaches and bad dreams.

“Back then, we used to take Efavirenz, one of the antiretrovirals (ARVs) which would make us drowsy or behave as if we had heights or have taken cannabis,”  she says.

Nawanyaga is aware that failure to take drugs increases her viral load, lowers her immunity and exposes her to diseases, which can be lethal.

 “U equals U, meaning I cannot transmit HIV to anyone. If it was not the drugs I would not be here. My ARVs are my life. If I do not take medication, I do not have life,” she adds. It is not easy for a young person to live with HIV because most people think HIV/Aids is a result of sexual immorality. “When I declared that I was HIV positive, some guy came in my inbox and asked me how many men I had slept with,” Nawanyaga recalls.

Love life

There is a lot of stigma associated with someone who is in a relationship with someone who is negative if they are positive.

So, is Nawanyaga dating?  “I will get a man who will love me for who I am because I believe everyone has a person they were created for, so I believe the right person will come at the right time,” Nawanyaga says.

Nawanyaga has also created a platform called Mutual Kind, which helps young people living with HIV to find love. She says the platform has so far registered one wedding and two proposals. 

Future prospects

Nawanyaga dreams of a world free from HIV, stigma and discrimination. “I still have life and I can achieve what I want, be what I want to be and there is nothing that can put me down,” Nawanyaga says.

She hopes to establish a home for orphans who are HIV positive where she can be able to help them. “I would love to bring them together and show them that they have brothers and sisters. I also want to set up a music centre for young people living with HIV to boost their talents,” she says.

She is also organising a concert to bring together people living with HIV to showcase their talents and also fundraise for the music centre for people living with HIV.

Nawanyaga adds that: “I have many goals and aspirations, I would love to work for United Nations one day, to be a minister or a Member of Parliament but I leave it all to God, I pray all the time that may His will be done”

She urges the youth to uphold integrity, transparency, hardwork, teamwork and communication in order to build strong relationships. She also believes that mentorship has smoothened her career.

“Many people have walked this journey with me, corrected and guided me. Among them are Dr Nelson Musoba, the director general of Uganda Aids Commission, Miss Uganda Foundation and my family,” says Nawanyaga. She advises young people who have not yet contracted the disease to be vigilant, adding that a life of taking tablets daily is not desirable.

Acceptance

As an HIV advocate and as a human rights lawyer, Nawanyaga says every time she face stigma,  she uses it to her advantage. “‘This is who I am. My HIV status is not going to change. Even at my lowest point, I know Aids is not the end of the world.”

   Nawanyaga is inspired by Philly Bongole Lutaaya, who declared his status at a time when stigma was at its peak, Rev Gideon Byamugisha, the first reverend in Africa to declare his HIV status publicly and Doreen Moraa, a young Kenyan woman living with HIV.

While she harshly judged and hated her mother, she acknowledges her as her strongest support system. Nawanyaga graduated with a bachelor’s degree in Law at Uganda Christian University. She worked with MU-JHU as peer educator to encourage other young people who are still struggling to accept their HIV status, to take medication and live happy and healthy lives. 

Today, she takes one tablet a day; that is a combination of tenofovir, lamivudine and dolutegravir (TLD).  It is a fixed-dose combination antiretroviral therapy (ART) used for the treatment of HIV infection. This medication is free of charge and she gets it from Joint Clinical Research Centre (JCRC).  “Taking medication daily is my lifestyle and this is how I have suppressed the viral load,” she says.