Stop the Stigma 🎗

March 3rd 2016 will forever be the day that changed my life. One time you’re busy living your life stress free the next minute a nurse is telling you to go test for HIV and Syphillis since sometimes their symptoms mimic each other. I was in denial for a couple of days but my nervous system couldn’t take it anymore and I walked into a VCT four days later during lunch break.

You ever sat down hoping for the best but expecting the worst. I told God if the test came back negative I would spend the rest of my days worshipping him. But God could only do so much. Flashback to December 2015. This is when I first started experiencing my first symptoms.

I could barely feel my left arm and an ugly rash formed on my left breast running all the way to my back. It cleared in less than two weeks. I thought it was pneumonia since my work involved getting into chillers. Two weeks later and fatigue got the better of me. I felt abnormally tired and excused it as having too much work. One month later and a white film formed on my lower lip. I thought since I was on heavy on antibiotics the previous year, my body was just reacting. Didn’t know that I was ignoring obvious signs.

Two month later and my job was asking for health certificates. At this time I started experiencing random dizzy spells. My body was shutting down and I was ignoring it. I had to oblige to company regulations and went in for the check up. In a way this ended up saving my life. They could not force me to take a test. And I was really offended that the nurse could think I was sexually promiscuous yet I hadn’t had sex in almost a year.

That Thursday I left the VCT facility feeling numb. I went to work and held it together till home time at 5pm. I hadn’t eaten anything the whole day including breakfast since I was nervous about my results. I wasn’t hungry. I took my bag and headed to the bus station. When I was finally seated and I was finally alone with my own thoughts, the floodgates opened. My seat mate looked at me weeping and minded her own business. It was finally hitting me that my normal routine had to change and not for the better.

When I finally got home, I sat down and started processing everything. I took out the leaflet I was given at the VCT. I had chosen an STC hidden in the lowest parts of town. Where nobody would see me enter. But I was still in denial. Maybe just maybe it was a false positive. And if I’m positive how long do I have to live? Five, maybe ten years? How long will it take for my body to finally give up and I start being a burden to others. I wanted to cry but I stopped myself. What was it going to help with anyway. I slept without eating anything.

The next day I left work early and headed towards the Special Treatment Center (STC). I handed my referral leaflet to the receptionist and I was guided to a nurse’s quarter. She, the nurse, to my surprise explained everything without any prejudice. I was shocked since I had heard terrible news of how AIDS patients were treated in public hospitals. She was nice and gentle and answered all my questions with no judgment in sight. She gave me some Septrin which I was going to take for the rest if my life, plus TB medication to help wade away any infections and I went home with some hope in me. She also told me I had to start classes before being put on medication. Every Wednesday at 9pm. I wondered how I was going to ask for permission from my supervisor for three Wednesdays. I actually thought of quitting my job.

The next three weeks were hell. I sank into depression. On top of my busy schedule I also had to add hospital visits, it was a change I definitely did not welcome easily. I stopped eating completely, sometimes I’d forget but this is one of the worst things you could do when diagnosed with an immune illness. I had to do a blood test plus a liver and kidney exam. This would decide what kind of ARVs I’d be put on. Turns out there are several. Remember I was still in denial, but when I got my CD4 results, the worst was confirmed. I finally accepted that I had one of the worst diseases known to mankind. I therefore sank deeper into depression.

I will not lie. I thought about suicide several times. I thought about carbon monoxide poisoning but I was too weak to light a jiko. I Googled if I could commit suicide using ARVs. The results were inconclusive so I gave up that idea. I thought of hanging myself but that was such a crude way to go. Plus they’d do an autopsy and find the reason I had committed suicide. I didn’t want to embarass my family.

The compulsory classes taught me a lot. That AIDS was no longer an accepted term, late stage HIV was. Diet and nutrition was very important. I had to eat a balanced diet and cut out on smoking and drinking. Especially drinking would inhibit performance of the drug. I had to take my pill at exactly the same time everyday. Not a minute earlier, not a second later. Inconsistency in taking the drugs would lead to resistance and possible death. That it was possible to live very long with HIV as long as I took my medicine consistently and lived a healthy life. I wasn’t going to die early as I previously thought. Turns out like many people in the population, I was clouded by a lot of misconceptions about what was ailing me at the time.

U=U. Then came my most important question. What about sex? Would I always have to use protection? No more raw sex? What about getting kids? Will I be able to get pregnant normally. The answer was yes. With consistent drug use, my viral load would reduce greatly and be undetectable. Undetectable means untransmissible. Meaning I could indeed have raw sex with my partner without any risk of infecting him. But I also ran the risk of getting secondary infection so being faithful was very important. This bit of information made me very happy. Question is, who would be willing to have sex with me knowing my status, knowing that I was positive.

Dating confused me at first. I gave up on a lot of good people because i was not willing to have that conversation. I made a promise to myself that I was never going to pass it on to anyone else. So I stopped dating for a while, well until my status reached undetectable. I always made it clear to my romantic interests that I am positive but I cannot infect anyone. That they’re safe with me and I don’t mess around. I’ve had three great relationships where we were very open about how we felt but I’ll tell you two funny stories.

The first guy I dated, came one year after I had started my treatment. When we broke up he outright told me that I had lied about my status. That how comes he didn’t catch anything yet we used to have raw sex even during my period. And all I could think of was that was a very weird way of testing if someone is infected. Like did you want the bug or what? The second guy was the opposite. He actually saw me taking my pills and when our relationship hit the rocks and I was ignoring him. He came crying that I had infected him. His cousin later revealed to me that he was lying as a last ditch effort to get me to talk to him. The day he was texting me that he was from the VCT, he was actually at home the whole day watching TV. At that moment he’d actually gotten another chic pregnant and they were going to the clinic together. Their booklet clearly showed he was negative. His total disdain of how these news would affect me made me cut contact with him completely. We are busy trying to fight stigma and those were the kind of stunts he was pulling.

I was jealous when I learnt there are people who can’t get infected. That their cells lack receptors thus the virus just gets washed away. Evident especially in married people where one is promiscuous, gets infected and doesn’t tell the partner. They continue having unprotected sex but the other partner doesn’t catch anything. That they’re actually some weirdos out there called ‘bug chasers’ that actually want to be infected with HIV. They actively seek it and hope that one day they’ll catch it. Unbelievable right? With all that stigma going round why would you want to be infected?

Stigma is the only really bad thing about having HIV. How society views us and talk about us is the worst thing ever. Over four decades later and we’re still being looked down upon. My first month of being infected. I actually paid attention to what people were saying. It took me deeper into depression listening to people talking about us like that. But not any more. I correct anything contrary said about our status. First of all it’s a status and not a condition. Same way you’re negative am positive. And that’s the only difference between us. We live very normal lives and we shouldn’t be viewed as if we have a disability. I’m not ‘sick’, I just have a positive status.

How my family and friends took the news? Of course they were sad. They cried and it made me sad. But what really saddened me most, despite their support was they asked if I’d told anyone else. I was here with a life altering ailment and they were busy bring worried about the family’s reputation. What about my physical and mental well-being? Wasn’t that important too. But I understood them, it’s really hard to face the fact that it’s one of your own that has ‘one of the worst diseases in the world’. What would the neighbours think of us. Unfortunately stigma starts at home. First with you when you think your life is over when you get diagnosed and you totally give up. You look at your past choices and wish you’d done things differently. Then your family when they tell you to hush about your status. To me, the first step to fighting stigma is speaking out about it and definitely not in hushed tones. Educating the masses because you’ll be surprised at how much ignorance is out there.

So I had the opportunity to work in a Special Treatment Center for a while as a volunteer. I learnt a lot. Turns out I was among the ignorant masses too. People caught HIV through various means and it wasn’t a must for them to be promiscuous or even have sex. I worked with rape victims, sexual workers and children too. Instead of being sad about it we tried our best to act normal. Stigma of any form should actually be shunned and shamed. Illness can easily afflict anyone. You don’t have to experience it to practice humility. And most important, remember to stay kind. You never know what someone is going through.