Many single people will tell you that dating in today’s world is ridiculously frustrating. For people living with HIV, the struggle of dating is amplified…to the 10th power. But don’t tell Susan Wairimu Metta to forget about love or that she should lower her standards just because she is HIV positive. The 40-year-old HIV activist is determined to live life to the fullest, and that includes finding true love one day. And if you happen to be living with HIV, so should you, she says.
“Love yourself enough to know your worth,” Susan told The Weight She Carries. “Never be desperate under any circumstances. You’d rather be late but get it right than rush and get it wrong.”
Susan is a certified HIV counselor and entrepreneur. She is deeply devoted to her advocacy work, which she considers a ministry. Countless people with HIV reach out to Susan on social media for support and counselling, feeling they have nothing to live for or harbour negative feelings about themselves because of the stigma surrounding their diagnosis. Susan, however, has a different perspective.
“I believe [my diagnosis] was a blessing in disguise. There’s a reason I tested positive. And I’m this strong because there are people who look up to me. I can’t fail them; I have to be there for them,” she said.
In addition to being an HIV activist, Susan sells cosmetic products online and runs an events company with her sister.
I reached out to Susan to find out about her experience living with HIV and dating, and what her journey to self-love and acceptance has been like.
Can you share the circumstances leading to your HIV diagnosis?
I’m a former hotelier by profession, and I was doing reservations management. I’d been working in South Sudan on and off doing short contracts. In 2018, I had gotten a new job, a very good job, but I was going through a lot of pressure. I remember my mom was sick at that point so I was worried about her. And then I was in a relationship that was very rocky. So there was a lot that was happening in my life.
I was losing weight, but I thought it was normal because I didn’t have time to eat and I was stressed. Around October of that year, the government had an issue with my employer, so we were shut down and evacuated out of the country. That was another shocker. I started losing weight massively, even my hair began to come out in patches. By end of December, I had reached a point where I couldn’t eat because if I ate, my stomach would hurt.
I had a lot of opportunistic infections so the next month I told myself, ‘Instead of me sitting here, and I don’t know what is eating me, I would rather go to the hospital and get checked.’ I called my two sisters and told them I needed to test for HIV and needed their support. I tested positive and I started my meds the same day. I’m this person who loves myself so much, and I didn’t want to think of a scenario where I’d be so down just because I didn’t want to take my meds. So I started my meds that day on January 16, 2019.
Did you process the gravity of the diagnosis then or did it hit later?
The moment I saw my results, it’s kind of weird, but it was kind of a relief. Because at that point, I knew if I had cancer, then I would have a matter of maybe months or weeks to live. My sisters refused to let me go home alone thinking I might be suicidal, so they came with me. I remember that night, I couldn’t sleep. I was sleeping in a separate bedroom and I just started crying because now I think the fear for me was ‘what if the medication doesn’t work with me? What if I fail on this medication? I don’t want to die. I have so much to live for.’
At that point, I almost had full blown AIDS. I remember I just knelt. I’m a spiritual person, so I just prayed to God and I told him, ‘I don’t know what is ahead of me. I don’t know what’s going to happen, but just give me the strength. That’s all I need.’
Do you know how long you’d had the virus at this point?
Well, with HIV it depends. If you are living in a very stress-free life; you’re not taking any alcohol and you have a good diet, you can stay up to eight to 10 years before you start showing symptoms. But again, if you’re living a stressful life, it can react very fast. So I can’t tell exactly because on my last job, I was going through pressure and I was drinking a lot. My relationship was rocky, so clearly those were factors that might have made me get sick faster than somebody else. So I can’t exactly tell when I got it.
You have decided to be open and to share your story. When did you decide to open up and why?
Before I mentioned that my hair started falling off. I’m this person who sticks to one hairdresser. I’d been going to her for a long time and I thought we were friends. So I told her the reason why my hair had been falling off. She was very comforting, but shockingly, before the end of the day, everybody who knew me was literally calling me because so-and-so had told them and they were now spreading [the news]. Others even came to my house asking, ‘Is it true?’ I felt so bad. I’m an outgoing person but I couldn’t even go to a restaurant or anywhere around the city because of fear. I didn’t know who knew and who didn’t.
So because of that I started thinking, ‘Why can’t I own my story? So that even if people hear they’ll say, ‘she already owns it.’ It is better coming from my mouth, because that way, I will have freed myself from the stigma of being gossiped or talked about.’ So on the first anniversary of my diagnosis is when I went public about my status on Facebook. I remember somebody approached me and she’s called Diana Cage, she deals with cancer patients. She’s the first person who approached me to give me a platform to come out. And that’s how I came out and I owned my story.
How did it feel after letting it out and making that public on Facebook?
It’s like you’re locked in a closet and then all of a sudden, you’re out and you can smell some fresh air. You are no longer scared that so-and-so knows. I felt so relieved. It was one of the greatest feelings ever, feeling like I’m free finally.
How did your family react to you going public?
My parents are my number one supporters. My dad is a pastor, my mom is a church deaconess. And even at church they would be asked, ‘Are you not ashamed of your child?’ And then they would say, ‘No, we love her so much and we support her because she’s this courageous person who’s living to inspire others.’ So my family and close friends have been amazing, but I lost some friends and still lose people today. We think we are more informed as society, but we are not. I told some of my friends my status and they went mute.
Why do you think some people with HIV are not taking their medication or wanting to take charge of their health?
I think it’s because stigma is the killer here. This is the main problem because when HIV first came, we didn’t have ARVs. There is a lot that people don’t understand. I am living with the virus now, but by the time I tested, I had moved from the stage of having the virus to the stage of full-blown AIDS. My immunity was very low, so other opportunistic infections were literally pulling me down. The reason people used to die long time ago was because they were dying of AIDS. There were no ARVs to monitor the virus. What doctors were trying to cure were the other diseases, so there was a lot of medication. People tend to think we take a lot of medications, but I only take one tablet a day. So the stigma is the major reason why people are so scared of HIV.
Let’s shift to dating because, if you’re unmarried, then it’s quite likely that you are looking for a life partner. What has your experience been when it comes to dating with HIV?
It’s challenging because whether you are HIV positive or negative, relationships are still the same. There’s always a challenge in getting the right person – if it’s somebody who is HIV negative, can they accept your status? Not unless it’s somebody who is very exposed and well aware about matters concerning people living with HIV. You will find somebody will approach you because they think you’re beautiful and they just want to test the waters; or they think you’re vulnerable so they want to take advantage of you. You have to be very careful and very smart.
Then there’s the other side, whereby people with HIV want to date somebody but you realize this person may be [sleeping] around so you’re literally scared of getting another HIV strain and you’d rather be safe. Another person with HIV may not be mentally stable i.e., they have not accepted their reality, they may be very bitter and stigmatizing themselves. That is a toxic person. I preach this almost every week on my wall: just because you have the same status doesn’t mean we are compatible. And number two, just because I’m HIV positive, I am not lowering my standards. I will never be desperate for anything. I will still keep the same standards. The right one will come along.
I want somebody I am compatible with. I don’t care if they are HIV negative or positive. I’ve tried to date twice since my diagnosis. One was somebody who was HIV positive as well. And as I said, mental health is very important. I’m still single, but I’m waiting. I’m not in a hurry.
What kind of advice do you have for women who may have HIV or some other health issue that they feel will interfere with finding love?
Self love is key in self acceptance. You need to love yourself enough to know what’s good for you. I tell people this: when you walk into supermarkets, you’ll find one product made by different companies with different prices. Where you place yourself on the shelf in a supermarket determines who will approach you. You are literally what you attract. So as you’re loving yourself and accepting yourself, have you worked on you? Have you worked on the bitterness? Get over that bitterness. Love yourself enough to know your worth. Never be desperate under any circumstances. I’m 40 and I’m not even worried. I don’t know why people should feel like they are running out of time. Have your standards, value yourself, love yourself and never be desperate for a relationship.
Watch our interview below:
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Vimbai E. is a writer, journalist, ghostwriter and the founder of The Weight She Carries. With hundreds of articles publishing online, in print and for broadcast, her love of language and storytelling shines through every piece of writing that bears her name.