Beyond the Stigma

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| This is the 127th story of Our Life Logs |


I believe a person can still have the strength to pursue their cause well beyond their limits. It is all about mentality and mindset. I began my life in the Nakuru County of Kenya in 1992. As the last born in a family of six siblings, I don’t remember much of my childhood until the death of my father in 1997. When my mother died five years later, I was taken under the wings of my elder sisters and many of my happy childhood memories came from being raised by them.

I oozed confidence as a child thanks to my elder sister, Viola. She was both a mother and a mentor to me. In a bid to emulate her confidence and decisiveness, I spent my life determined to find and mimic her courage. This is the greatest gift she bestowed upon me.

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In 2006, I was blissfully living my life as a teenager, attending a boarding school as an average student who was known for being nosy and loving life. I loved joking, and I didn’t take life too seriously. That all changed when my school hosted a blood drive campaign in 2007. On that day, my life turned into a blanket of darkness. They were offering free soda and biscuits to participants. Being a foodie, this was heaven sent for a student with a tight budget and little pocket money. I volunteered to take the blood test, enticed by the promise of freebies.

When my turn came, I hurriedly walked into the tent to get the test over with and win myself the treats. The counselor must have been tired because instead of taking me through the required counseling session, she only inquired if I had a boyfriend and if I had ever tested before, both to which I answered no. She explained how to interpret the HIV test kits and sent me on my way. When my result showed the double strips indicating that I tested positive, my fate was sealed. From that moment on, life became a nightmare.

All the goodies I had wanted so badly suddenly lost all their appeal. I walked in a trance after the results, struggling to envision what these results would mean for me. All the negative perceptions I had about HIV/AIDS were now flooding my brain. To me, HIV meant death—and my death sentence was so real I could almost smell it. HIV positive meant I’d be destined for a life of wrinkled skin, brown weak hair, and red cracked lips. Not to mention I would die really soon!

My legs felt weak as I walked farther away from the tent. I leaned on a nearby pole to help myself sit down and get ahold of my racing heartbeat. Could God be this unfair? I had been a good girl. Carefree yes, but never had I been intimate with anyone, yet, I had a despicable monster crawling in my blood. It hit me with a pang of anger and bitterness.

I wanted to talk to my siblings about the results, but not over the phone. This was too important. Instead, I went to my best friend and blurted out about this news, desperate to tell someone. She laughed, thinking I was pulling a prank on her because I was always making fun. I pulled out the result card and showed it to her. When it finally dawned on her that I was serious, she became the friend I needed right then, and said all the right things I wanted to hear.

I should have known that she was just a teenager then, unable to handle such a life-changing confession.

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I didn’t tell my sisters for four days. I had not gathered the courage yet. Perhaps because I was still in denial and that’s why I kept quiet. My secret was only safe for four days before my friend told someone and it spread all over school. While I was heading to the dining hall for my meal, I noticed students holed up in small groups whispering. They shied away and did not want to associate with me. I felt like a plague. These were people whom I played and laughed with just five days earlier.

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Image courtesy of Pixabay | @Tentes

I decided I would tell my siblings during visiting day and chose go to my school counselor instead. This was one of the greatest choices I ever made. The counselor was very understanding and educated me about the what being HIV positive really meant. She told me that most people lived with HIV and that it was no longer a death sentence, contrary to my original perception. She offered unconditional support, as did most of my teachers.

I wanted to tell my sisters about my problem in person, but since that would be difficult, I faced my fears and called my eldest sister after the counselor’s insistence. My teachers made things bearable. Still, I struggled to endure the stigmatization from ignorant students until I completed high school in 2010.

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During the call to my eldest sister, Viola, I learned the source of my predicament. I was born to HIV/AIDS positive parents and the only one infected. My mother had a problem accessing the anti-retroviral drugs she needed to prevent mother to child transmission. To be the only one infected out of all my siblings felt unfair. They could live normal lives while I would have to go through endless medication and needles. I felt bitter, yet I could not bring myself to judge my parents without understanding their predicament. True, I used to get sick as a toddler, but I thought it was just normal for children my age. With no proper care, stigma and lack of information, her fate—same as dad’s—was sealed. My siblings were not sure if I was infected, but with the knowledge I had given them, they took it upon themselves to ensure that I had the best care to manage it.

I was given to one of my aunts who could afford to take care of me. I went through three sets of counselling sessions before I was finally enrolled in drug therapy. My CD-4 count was at its lowest which meant I was prone to opportunistic diseases like meningitis. The fear of knowing I was going to have to take ARVs (antiretroviral drugs) my whole life was shuttering. I felt confused, odd, suffered low self-esteem, felt unworthy of living, and…I felt like a loser.

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I didn’t start dating until after high school and trying to date did not make my status any easier to cope with. I had decided that unlike most people who had the virus, I would not engage in sexual activity with multiple partners to spread the disease. In fact, any man who hinted that he was interested in me would be met with a clear-cut response.

“I am infected with HIV.”

Most guys dropped the chase when they learned that detail about me, but some thought I was using that as an excuse to disqualify them. When I’d prompt them to go with me for an HIV test, most of them left me alone. This was how my encounters with men went until I met one special guy who did not care about my status at all. He loved me as I was and was willing to be with me, despite my status.

I have always loved kids, yet I was scared to have kids after discovering my status. Around this time, I started taking a course in counseling and HIV/AIDS. I learned how HIV is contracted, what really triggers the opportunistic infections, and most of all, how to end the misconceptions through advocating for a Stigma Free Society.  I was comforted by the knowledge I had learned from the course, so I went ahead and got married.

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I became a member of a treatment facility which gave me immeasurable support to give me the proper advice to deal with my HIV status since 2009. What I figured out was that as long as I was taking all my medicine religiously, the virus got suppressed to the point that it’s undetectable. At this level, intimacy with my partner wouldn’t infect him.

During both of my pregnancies, I took my medicine without fail. My facility told me that as long as my viral load was undetectable, I could have healthy children. I ensured that my children were given Nevirapine (a type of antiretroviral drug) an hour after birth, and continued doses for the first six weeks of life. I also made sure my children would follow the proper treatment to keep them free from contracting the virus.

Though everything seemed to line up to keep my kids from getting HIV, I soon learned that the doctors were not going to help me much to push out my babies or give them the antiretroviral drugs after birth without me reminding them. This experience made me realize that if I wanted my children to be HIV negative, I had to take matters into my own hands. I had to be proactive to ensure that they were tended to the right way. My counseling and HIV testing knowledge came in handy on both occasions, and if I wasn’t so proactive, my kids may not have been so lucky.

Six weeks after each of my children’s births, a dry blood test was carried out on my babies and the agony of waiting for a whole month for the result was frustrating. Luckily, when the results came back, they both came back okay. When each child turned two years old, they had their final test and confirmed to be HIV negative.

Phenny and her daughter
Me and my daughter.

Most people still don’t believe that both my daughters, who are now three and two and a half years old, were exclusively breastfed for the first six months without ever contracting HIV. I’ve spent my whole life attempting to dispute the myths surrounding people who are suffering from HIV/AIDS. Most people don’t realize that as long as you take your medicine consistently, you can raise children free from HIV. I have been HIV positive for the last 26 years and have used antiretroviral drugs for 10 years. I have taken care of myself and I am not careless with my sexual life. This is the reason I do not suffer from AIDS.

Phenny Breastfeeding
Breastfeeding my child.

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My husband and I were together for three years until he and I separated just two weeks after my second daughter was born. It was a low moment in my life. I was so broken and bitter. It was a deep blow to my self-esteem. I lost his support, psychologically and emotionally, especially with administering the drugs to the kids.

For about ten months I wallowed in pain. Then it hit me. I still had my treasures. They needed me. If I lost myself again, they would lose both parents, and I couldn’t do that to them. I forced myself to bounce back by re-strategizing and prioritizing what was really important to me, which was my kids. It has been two years since that moment. I have moved on and hope to marry again if I meet someone I love who accepts me.

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Dealing with the stigmas, discrimination and lack of HIV Awareness all my life, made me pursue advocacy. If I were HIV Negative, I never would have thought of pursuing advocacy. I would probably be stigmatizing people living with HIV too. That needs to change. I plan to teach my children that people’s stigmas and discrimination about things are usually from ignorance. My kids will not have that ignorance. I’ve started teaching them about HIV Awareness, by exposing them to stuff like ARVs to show that HIV doesn’t mean death anymore.

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Me (left) during a campaign.

If people realized that HIV isn’t as hopeless anymore, we’d live in a better, more accepting place. Sometimes, it is not always the fault of the person if they are HIV positive. HIV/AIDS is the cheapest to manage but the stigma in Kenya makes it expensive. I want to ensure it remains inexpensive to all. It does not have to end in the grave. I, like so many others who are infected, am more than HIV/AIDS.

Section Break

This is the story of Phenny Awiti

Phenny is an outgoing activist, advocating against stigma for people living with HIV/AIDs. In high school, Phenny learned that she was HIV positive after her mother failed to use the proper retroactive drugs to prevent Phenny from infection. Phenny is creating awareness on exclusive breastfeeding of babies born to HIV positive mothers and stresses that people living with the disease must adhere to medication in order to reap the full benefits of a normal life. She is raising 2 children born and exclusively breastfed for six months yet living HIV negative lives. She is a counselor and does online writing to support her family.

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Phenny, 2018.

 

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This story first touched our hearts on August 1, 2018.

| Writer: Opondo Maureen | Editors: Kristen Petronio; Colleen Walker |

One thought on “Beyond the Stigma

  1. you such a strong gal Phenny….. May the Almighty give you strength and courage to reach the millions who are in the same situation.
    May the Angels guide you and may your kids have the best life ever….
    Would have shared much, but will do it when the right time comes….
    You a hero…..you inspire n give hopes

    Liked by 1 person

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