Being HIV-positive can bring on mental health issues
Story and photos by Belle Kim
Reporting by Belle Kim and Khadijah Abubakar
(copied from http://journalism.indiana.edu/programs/kenya_2013/2013/07/09/being-hiv-positive-can-bring-on-mental-health-issues/)
ELDORET, KENYA — She took careful, measured steps down to the front of the crowded lecture hall at Moi University’s main campus just outside Eldoret.
She faced the students as they scrutinized her—head held high, back erect, eyes bright.
Mya Nekesa was a mere slip—a slim, wispy, fragile woman who looked distinctly out of place among the rambunctious 20-year-olds whispering excitedly.
[Editor’s Note: Mya Nekesa’s name has been changed to conceal her identity and protect her privacy at her request.]
They were talking about her.
No. She mustn’t be paranoid, she told herself.
But they probably were.
A surge of anger passed over her as she determined, once and for all, to disperse the rumors that clung persistently to her like dust.
“I’m HIV-positive,” Nekesa said. “If you don’t want to be around me, just leave me alone.”
She gazed steadily into the faces that gaped mutely back at her, registering shock, disbelief, horror—even disgust. Her headmaster opened his mouth but uttered no sounds. He had no words for her.
Nekesa didn’t care.
After everything she’d survived—depression, substance abuse and suicidal thoughts, for which she had received counseling at Academic Model for Providing Access to Healthcare (AMPATH)—the students’ disdain was nothing but a mere inconvenience at most.
The mental health services offered at AMPATH, an organization founded upon a partnership between Moi University and eight North American universities led by Indiana University, helped her trudge on.
AN ARRANGED MARRIAGE
A decade ago, Nekesa was no different from any other adolescent in Kenya, dreaming of a better future colored with plentitude and hope. Life was hard—she and her six brothers lived with their single mother and money was bound to be tight—but it was manageable.
She and her mother fervently believed education was the way out. Nekesa studied diligently in school and planned to go to college.
And then her mother died.
It was an insurmountable loss for Nekesa and her siblings. They suddenly found themselves homeless, without a single shilling in their pockets.
“We lost even the clothes off our backs,” she said.
They were placed under the care of their grandmother and uncle, who balked under this new responsibility.
“You’re too old to be a burden to us,” they would tell Nekesa. “We have to look after your brothers, too. Why don’t you get married? Why don’t you get off our hands?”
Stressed from their constant nagging, Nekesa confided her troubles to a man she had befriended. He immediately offered to marry her and approached her uncle with his proposition.
“I think he knew his status then but didn’t tell me because he wanted a wife,” she said.
Her uncle happily accepted the proposal and Nekesa was ordered to marry this man in 2003, despite her misgivings and reluctance.
Less than a year later, she was pregnant.
Nekesa wasn’t sure how this man was going to react. Would he be happy? Would he be regretful?
She wasn’t prepared for the accusations he hurled at her.
“This baby is not mine,” he told her. Her old high school boyfriend must be the father of this baby, he said. She was not going to get away with pushing this child onto him. Did she think he was stupid? Well, he was certainly going to prove her wrong.
The man abandoned her and just like that, her marriage was over.
In January 2005, Nekesa waddled to the hospital, hand placed protectively over her bulging belly. She was six months pregnant.
“I was willing to work for the baby,” she said.
She managed to scrape together a pile of supplies for the baby as she awaited its arrival.
Nekesa recalls that in those days, all pregnant mothers were required to get tested for HIV. So she went, doing her best to ignore a vague foreboding feeling chewing the corners of her mind.
The test returned positive.
She was just 21 years old.
“I was so angry. I felt like I was going to kill him,” Nekesa said. “I was so discouraged. It was like a door had been shut and I was on the other side, waiting to die.”
She fantasized about stabbing the man who had given her this infection—saw him die in her imaginations hundreds of times. But she wanted nothing on her conscience, so she found out where he was staying and trudged over to his house. She told him that she was HIV-positive and urged him to get tested.
“He just sent me away. He didn’t want to hear it,” she said.
He was already sick. He died shortly after, just a couple weeks after Nekesa found out about her status.
“He got what he deserved,” she said.
In the months following the disclosure, Nekesa lived in anger. She woke up angry and went to bed angry. She was filled with rage that had no release, no escape. Her mental health deteriorated rapidly.
Claris Ojwang, assistant program manager at the Psychological Counseling Services of AMPATH, said such experiences are common among those who are HIV-positive.
“We did a study on depression and found that HIV diagnosis itself is depressive in the sense that it comes with so much loss: loss of status, loss of income, loss of social standing, loss of support,” Ojwang said.
Nekesa certainly felt that she had nothing. She put herself through so much stress and her body, already weak from her pregnancy, just couldn’t handle it.
She miscarried at seven months.
“I never felt bad because of the anger,” she said. “I thought, ‘It’s for the best. He might have been like his father.’”
Nonetheless, something within her just snapped. She was severely depressed. She drank to numb some of the pain. She told herself she was using alcohol just to relax—but she knew it was because she couldn’t cope.
She thought she was meant to die.
“Depression is very common. When they can’t work, when they can’t provide for their family, when they don’t receive support, they get depressed,” said Edith Chemurion, assistant manager of the outreach program at AMPATH.
Nekesa’s struggles to combat her depression only intensified when the woman she was sharing a home with began taunting her.
“She kept stigmatizing me and saying that I was going to die,” Nekesa said.
She decided to stop taking her antiretroviral medications that she had received from AMPATH. She was experiencing painful side effects and just wanted it to stop.
“I was vomiting and feeling sick. I didn’t believe they would cure me,” she said.
Nekesa didn’t want her roommate to see her taking drugs—faulty drugs that she believed didn’t even work. She went to AMPATH and filled in a form terminating her treatment there.
In the two months that followed, Nekesa shriveled to just 80 pounds and lost a great deal of hair.
“I was 21 years old, but I looked like a 10-year-old girl. I was tiny,” she said.
But she wasn’t dead.
“I figured if I wasn’t dead yet, God wants me to live. I wanted to go back to school. I wanted to find a new place to live,” she said. “I figured I can move on with my life.”
Most of all, she wanted to go back to school.
She still believed education was the way out—and she wanted a better life for herself. But she had no money.
That’s when the miracle happened.
HEARD ON THE RADIO
One day, Nekesa turned on the radio and heard the story of a woman named Rachael who was living positively with HIV. She mentioned her phone number and Nekesa scribbled it down on a scrap of paper. She knew she was clutching at straws, but she couldn’t let even one pass her by without throwing her hands out.
“I called her and asked her where she lived. I went to see her,” Nekesa said. “She said I had to go back to AMPATH for her to help me.”
Eager to restart her schooling, Nekesa returned to AMPATH and was put on the same medication.
“I was told that I should just swallow them even if I don’t have faith in them,” she said.
And they worked.
In September 2005, Nekesa successfully returned to school. This gave her something to hold onto in life. She pushed aside her suicidal thoughts and focused on living. She remembered that she had six brothers who looked up to her—six brothers who were struggling to survive under the neglect of her grandmother and uncle.
“They were suffering and not in school. Life was bad for them, so I brought them here to share whatever I have,” she said. “I never told them about my HIV status because they will be devastated. I don’t want them to feel like they will lose me.”
Despite her best intentions to improve all their lives, however, they continued to struggle. Where was she going to get the money to feed six mouths? How was she going to pay rent? What about the school fees?
After completing her first year in university, she deferred her second and went to AMPATH to apply for a job.
“I was asked why did I defer,” she said. “I told them that I have so many problems even I can’t think in class.”
The employee referred her to the Orphans and Vulnerable Children program within AMPATH.
“They said they would help me get back to school, and then I can come back and apply again,” she said.
AMPATH helped pay all the fees. Nekesa also began receiving counseling.
“The therapeutic value of a person sharing their experiences with a sympathetic listener is unparalleled. It can’t be found in medicine,” Ojwang said. “This is the human face of AMPATH. We help give a sense of identity to people with HIV so they can get some support that their community denies them.”
Nekesa was able to experience catharsis as she talked out many of her problems and stresses.
“It was so comforting,” she said.
The support and attention she received during these sessions helped her let go of her anger. She began to forgive her deceased husband for transmitting the virus to her. She began to forgive her grandmother and uncle.
She began to forgive herself.
In that process of healing, she said she felt more and more empowered. She remembered that she had self-worth, that she was a strong, courageous woman with a bright future ahead of her.
“I felt my depression lift. I went back to my second year and was so relieved,” she said. “I was doing well.”
She was finally able to relax—to take a breath.
And then a fellow student asked her why she took so many drugs every day.
What could she say?
Nekesa opted for the truth.
“I’m HIV-positive,” she told her. “But you don’t need to be worried or sympathetic. I’m just telling you.”
Her friend’s reaction was perhaps predictable.
“She went home telling people all about me,” she said. “I got so angry that I made an announcement in class.”
In the weeks following her declaration, Nekesa noticed people started staying away. Many didn’t want to associate with her any more. They walked away from her, avoided her eyes.
This didn’t deter her from continuing her education, though.
“I thought. ‘let me give them time. The more they see me, the more they’ll understand that I’m not on my deathbed,’” she said.
She was right.
Some of her friends renewed their friendships with her. Nekesa was even invited to provide motivational talks in various university clubs.
Then, in 2009, Nekesa heard about a lecturer at the school who was HIV-positive. One of the students lived next door to him and would gossip about his private life with others.
“I was angry that they were talking bad about him and talking as if he were to blame,” she said. “No one wanted to take his class, but I did.”
It wasn’t long before she realized they were falling into a romantic relationship.
Her previous experiences with such relationships in the university had been rather unsuccessful. Men would approach and ask her to be their girlfriend.
And she would tell them without hesitation: “I’m HIV-positive.”
She didn’t want it on her conscience.
Most would respond with, “Oh, okay. I think we should just stay friends.”
When she told the lecturer that she was HIV-positive, he gave her a look that said, “So what? I’m HIV-positive, too.”
They’ve been living together since 2010. They officially tied the knot last year—a second marriage, a second husband who is HIV-positive.
But this time, it was her choice.
She now has three kids, all HIV-negative, and she is happy. Happier than she ever thought she could be.
“I feel very lucky,” she said. “The fact that I’m HIV-positive makes me no less than anyone else. I learned to take care of myself.
“I’m the first one to know I’m not going to die.”
A DEATH SENTENCE
Before AMPATH began providing affordable antiretroviral therapy for clients in 2001, a positive HIV status was a death sentence for most in sub-Saharan Africa.
Franklin Kalu, diagnosed almost a decade before Nekesa, stared at what he thought was his own death sentence after an HIV test in 1996.
[Editor’s Note: Franklin Kalu’s name has been changed to conceal his identity and protect his privacy at his request.]
Kalu had come to the hospital merely to get treatment for malaria. When the disease progressed to cerebral malaria, he was tested for HIV.
He was positive.
In that moment, he knew he was going to die.
“I did not know how to tell my family about my status, so I kept quiet about it at first,” he said.
What was he going to tell his wife? How was she going to react? What if she left him? What was he going to do? What could he even do?
He decided all he could do was to bury the knowledge deep within himself—hide it from everyone, including his loved ones.
“Keeping secrets is a big part that contributes to depression,” Ojwang said. “Disclosure is the bedrock of care, whether it’s psychological, physical, or nutritional.”
Kalu soon developed a host of other health issues. One morning, he woke up to find a strange growth behind his ear. He did not want to set his foot in the hospital again. He was not about to have another hospital employee tell him that he was HIV-positive.
He was in denial.
He decided instead to visit a traditional medicine woman.
“You have symptoms of HIV,” she told him, peering at him with her large eyes. “If it’s true, you must tell your wife.”
Reality dawned upon Kalu. Simply ignoring the problem would not make it disappear. He had to address it.
Accordingly, he told his wife the truth.
“She got so upset. She started crying and shouting. We argued the whole night,” he said. “She had suicidal thoughts.”
She blamed him for the disease, screaming that he must have gotten it from one of the women he slept with during his excursions to town. She eventually packed up all her things and Kalu watched helplessly as she left for her parents’ house without a backward glance.
His own parents were startled and confused by his inaction. Why wasn’t he going after her? Why wasn’t he reclaiming her? He had paid the bride price; she was his. It was the right thing to do.
After three months of awaiting her return, they decided to find her with or without their son’s cooperation. The three of them went to the home of Kalu’s in-laws for a meeting and there, his wife revealed that Kalu was HIV-positive.
Fortunately for him, his parents were illiterate and knew nothing about the nature of the disease. They offered him support and encouragement.
“He is still your husband. You must go back,” they told his wife.
She steadfastly refused their demands and Kalu returned alone.
He needed someone to take care of him, so he decided to find a second wife. He selected a woman he had already been seeing for a while—they even had a child together.
He did not tell her that he was HIV-positive.
“She would not have wanted to marry me,” Kalu said. “I hid my status from everyone, especially my neighbors, to avoid stigma.”
In 1998, he heard about AMPATH. He was directed to room 49.
Even within AMPATH, no one wanted to go near that space.
“That’s where HIV-positive patients went so everyone stayed away,” he said.
Due to the high cost of antiretroviral medication at that time—they were around 2,000 shillings each, or about $24—there were only a few patients. His brother, who worked at the Moi Teaching and Referral Hospital, helped with the costs.
When he first began treatment, Kalu had a CD4 count of about 20, which meant his immune system was on the brink of total collapse. The ARV medications significantly improved his health.
But they also had an effect he did not predict.
“Back then, AMPATH had a home visit car that went around to the homes of people who missed clinic. So the car came to my place and all my neighbors knew I was HIV-positive,” he said.
Much like Nekesa, Kalu became isolated from those who discovered his status. Many people no longer wanted anything to do with him. As a result, he lost his job as a broker. These people, who used to be his friends, thought just touching the money he handled would give them the virus. They avoided him and took care to give him a wide berth whenever they passed him on the streets.
“The most difficult thing about living with HIV was all the stigma I faced from so many people—people who were supposed to be my friends,” he said.
Jobless and distraught, Kalu began drinking. He woke up, took his ARVs, drank himself into a stupor and went to sleep. He did this for three years.
Simon Kamau, an AMPATH employee at the psychological counseling department, says he commonly finds cases of substance abuse among male clients.
He himself drank when he found out he was HIV-positive. He drank to cope with the stress of telling his wife his status. He drank when she left. He drank when friends, neighbors and even family turned a blind eye as he stumbled about, attempting to navigate through a labyrinth of misery and hopelessness.
“Taking good care of yourself is not possible when under the influence of alcohol,” Kamau said.
He was eventually able to lessen his alcohol intake after countless support group meetings and counseling sessions at AMPATH.
Kalu ended his alcohol abuse much more abruptly. In 2001, he found out that his second wife was pregnant.
“I realized I have been wasting my life and I needed to resume my role as a father,” he said.
He started farming and selling the produce to make a living for his family. He continued to hide his status from his second wife, however. She found out that he was HIV-positive from his first wife.
“They ran into each other in a shopping center and they started fighting,” he said.
The second wife came home in a rage and confronted him about his status.
“Is this true?” she asked.
Even then, he refused to acknowledge his status. He feigned astonishment and acted insulted at her accusations.
“If you don’t believe me, get tested. I will go with you,” he told her.
They went to the hospital together for testing. Before she found out that she, too, was HIV-positive, the employees provided her with counseling and told her that one can still live a fruitful life with HIV.
“She reacted much better than my first wife,” Kalu said.
She started going to AMPATH and utilized its Prevention of Mother to Child Transmission program. Thanks to these efforts, her second child was born HIV-negative.
In time, even Kalu’s first wife came to realize that a positive HIV status was not so bad as she had previously feared. She came back and joined Kalu’s household. He now lives with his two wives and children.
“I am happy now. I’m no longer afraid to talk about my status,” he said, adjusting the rim of his pink cap placed jauntily atop his head. “Being HIV-positive is just a disease like any other chronic illness.”
He has been working to develop a network of support group for those living with HIV so the stigma and discrimination they feel can be mitigated.
“Now, I just want to help those who are still in the closet about their status,” he said. “I’ve witnessed people die due to hiding their status and that should never happen.”