From HIV To Hope: Camille's Story Of Diagnosis & Survival In Honor Of World AIDS Day

Her Voice

This is Camille's story, as told to Brenda Alexander.

I returned from my first trip abroad, a dream vacation in Africa. It was 1994 and I was 25, feeling on top of the world.

When I arrived home, I fell ill. My physician told me that I'd contracted Idiopathic Thrombocytopenic Purpura, also known as ITP. My doctor said that it was a side effect of Mefloquine, a prevention medication against malaria that I'd taken before the trip.

ITP had me feeling fatigued and I developed bruises all over my body. Doctors told me that some bruises may be permanent, but it wasn't likely. I was sent to a hematologist to investigate my blood and why I wasn't recuperating. I was put through a series of blood tests; one of them was an HIV test. The first time, they lost my results, so I had to retake it. Back then, results took one month to come back, which I meant I had to wait an agonizing two months for my results.

After those two months passed, I was told that I was HIV positive.

The doctor told me they wouldn't treat people who had both ITP and HIV. I was left to fend for myself. And during that time, you were considered dead with that diagnosis.

I asked if they could detect when I was infected. "You've had HIV for two years," they said.

I had been dating my boyfriend longer than two years and hadn't been with anyone else.

I knew men played the reversed psychology/blame game after being confronted about STDs so I devised a plan in case he tried the same. I contacted all former lovers and advised them to get tested. They all reported back that they were negative.

When I finally told my boyfriend, he was in denial. "The test is wrong," he claimed. I countered that the doctors ran my blood 3-4 times per protocol to ensure the diagnosis was correct and my exes were negative. He refused testing. "I won't be able to handle it like you," he said.

Six months later, he was incarcerated. While in prison, he tested positive. When we spoke, he was calm, never blaming or questioning me. Instead, he suggested we get married since we both had the virus. He knew he was the culprit. In fact, he'd messed around before.

A year prior, he confessed he'd contracted chlamydia after cheating and told me to get tested. He paid for my doctor's visit and accompanied me to my appointment. My results came back negative. The counselor suggested that I also take an HIV test but I declined. I'd already suffered enough trauma from that experience. I refused because I couldn't face a potential positive result. Had I taken the test, I could have learned about my status sooner.

The doctor prescribed the only medication available at the time, AZT. I had a friend who passed from the virus and deteriorated quickly while on AZT. He lost weight and his skin color changed. Witnessing that, I opted out of treatment. I told my doctor that I was leaving town. "Could you give me a copy of my medical records?" I asked. "I'll handle it when I move."

I left Philadelphia and walked with HIV untreated until my health began to become affected. I was scarred by the insensitivity of the first doctor.

I told two people about my status. One of my cousins told her husband. Another told her kids. A friend of mine had a friend who liked me. I went out with him and disclosed. He went back and told my friend - who had no idea. The news was too big for people.

The part of my life that "suffered" were romantic relationships. I never cared about marriage, but I wanted a lifelong partner. The difficulty in dating and living with HIV became real very - fast. I took a vow of celibacy.

It wasn't until four years later that I was intimate with someone, but it was an uphill battle. A man that I was dating for about a year (without sex) told me he'd never have sex with me after I disclosed my status. He later changed his mind. But with him, as with many, you can feel their fear during sex. I ended things because I didn't want to burden him.

Some were fine with my status because they were educated on the effectiveness of condoms. Others vehemently refused to date me. One guy even asked, "Why'd you let me kiss you?" after I disclosed my status to him.

For a long time, I reconciled that I may be "alone." So I focused on other aspects of my life.

A woman I'd met in my 20s was an avid traveler, which I admired. I asked how it was possible for her to travel to so many places. She told me, "If you don't ever believe you will, then you won't."

That stayed with me. I thought, I don't have to live a long life to live a great life.

So every day, I began to live as if it were my last.

I poured my energy into traveling. I performed and traveled as a vocalist with international bands and eventually became an HIV advocate. Without HIV, I wouldn't have been as full because I wouldn't have had the emergency courage.

Still, things were difficult. It wasn't until I was positive for about 20 years when I learned that aside from condoms, daily medication and becoming undetectable would prevent me from passing the virus onto anyone. There had been advances before but when I was avoiding treatment, I knew nothing. I became fearless. Before that, I felt like I was in a state of hiding. It was stressful and demoralizing.

I felt like a despised animal among human beings. I felt like damaged goods and less than a woman.

Today at 50, I don't have children. Many women are mothers before age 25, which was the age of my diagnosis. I took birth control at 25 to avoid unplanned pregnancies. Had PrEP been available back then, I would have planned for a family.

For women in particular with this virus, we are more likely to be ashamed or feel guilty, so we don't talk about it.

Many women share men, whether it is acknowledged or not. How many women are in on-again-off-again relationships with men? How about sleeping with married men or men who live with their current or former partners? Do they really know their status or the status of their other partner(s)?

Assumptions are made because women feel like the men they are sleeping with are men who belong to them. Trust cannot be implied when it comes to having sex.

You have to be your own advocate, especially in terms of your sexual health. This extends beyond the bedroom. Talk to your physicians. In many cases, your provider isn't likely to bring up preventative tools besides birth control. I had several doctors I saw after my diagnosis who weren't aware of my status. They didn't ask, I didn't tell, and I wasn't tested. You have to ask. They are more likely to have the conversation with you after an unfortunate incident.

Just like you take birth control to avoid unplanned pregnancy, use condoms and/or PrEP to protect yourself against STIs.

If diagnosed, life changes. Your family life will change. Your opinion of yourself will change. No matter how strong you are mentally - no matter how educated you are - there is an immediate shift that takes place. And that weight is avoidable.

When you hear my story, you probably think HIV isn't an issue anymore, considering I was diagnosed in '94. That's far from the truth.

In the 90s, we had the Magic Johnson announcement, the sudden death of Eazy E and the tears from 11-year-old Hydeia Broadbent to make us "woke" about this virus. We don't have a FACE to the virus anymore.

Many are undetectable and they don't have to disclose their status. This is why conversations are so important.

My life is amazing and I wouldn't trade my journey. I found and lost love, I'm confident and am an expert on my virus, making a future mate comfortable as I'm able to educate them. There's no longer a barrier.

People can live long, healthy lives and outlive people with other diseases. But the stigma is still strong.

HIV is equated to promiscuity, homosexuality, and drug users. That's the dangerous part.

Don't be a part of the stigma. Know your status. Advocate. As the saying was in the 90s, "If it affects one, it affects all."

This fight is nowhere near over.

For more information on HIV/AIDS, click here. For more information on where to get tested, click here.

Featured image by Getty Images

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When I was ten, my Sunday school teacher put on a brief performance in class that included some of the boys standing in front of the classroom while she stood in front of them holding a heart shaped box of chocolate. One by one, she tells each boy to come and bite a piece of candy and then place the remainder back into the box. After the last boy, she gave the box of now mangled chocolate over to the other Sunday school teacher — who happened to be her real husband — who made a comically puzzled face. She told us that the lesson to be gleaned from this was that if you give your heart away to too many people, once you find “the one,” that your heart would be too damaged. The lesson wasn’t explicitly about sex but the implication was clearly present.

That memory came back to me after a flier went viral last week, advertising an abstinence event titled The Close Your Legs Tour with the specific target demo of teen girls came across my Twitter timeline. The event was met with derision online. Writer, artist, and professor Ashon Crawley said: “We have to refuse shame. it is not yours to hold. legs open or not.” Writer and theologian Candice Marie Benbow said on her Twitter: “Any event where 12-17-year-old girls are being told to ‘keep their legs closed’ is a space where purity culture is being reinforced.”

“Purity culture,” as Benbow referenced, is a culture that teaches primarily girls and women that their value is to be found in their ability to stay chaste and “pure”–as in, non-sexual–for both God and their future husbands.

I grew up in an explicitly evangelical house and church, where I was taught virginity was the best gift a girl can hold on to until she got married. I fortunately never wore a purity ring or had a ceremony where I promised my father I wouldn’t have pre-marital sex. I certainly never even thought of having my hymen examined and the certificate handed over to my father on my wedding day as “proof” that I kept my promise. But the culture was always present. A few years after that chocolate-flavored indoctrination, I was introduced to the fabled car anecdote. “Boys don’t like girls who have been test-driven,” as it goes.

And I believed it for a long time. That to be loved and to be desired by men, it was only right for me to deny myself my own basic human desires, in the hopes of one day meeting a man that would fill all of my fantasies — romantically and sexually. Even if it meant denying my queerness, or even if it meant ignoring how being the only Black and fat girl in a predominantly white Christian space often had me watch all the white girls have their first boyfriends while I didn’t. Something they don’t tell you about purity culture – and that it took me years to learn and unlearn myself – is that there are bodies that are deemed inherently sinful and vulgar. That purity is about the desire to see girls and women shrink themselves, make themselves meek for men.

Purity culture isn’t unlike rape culture which tells young girls in so many ways that their worth can only be found through their bodies. Whether it be through promiscuity or chastity, young girls are instructed on what to do with their bodies before they’ve had time to figure themselves out, separate from a patriarchal lens. That their needs are secondary to that of the men and boys in their lives.

It took me a while —after leaving the church and unlearning the toxic ideals around purity culture rooted in anti-Blackness, fatphobia, heteropatriarchy, and queerphobia — to embrace my body, my sexuality, and my queerness as something that was not only not sinful or dirty, but actually in line with the vision God has over my life. Our bodies don't stop being our temples depending on who we do or who we don’t let in, and our worth isn’t dependent on the width of our legs at any given point.

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