The Cost of Not Knowing: Closing the HIV education gap

The Price of Silence and Misinformation

From the very first moment I learned I was HIV positive, I felt like a walking corpse. The cost of not knowing is steep when what you hear in Class 6 is “If you’re positive, you’re going to die.” That myth — born of an HIV education gap — robbed me of hope and set me on a terrifying journey. I spent most of my primary school life depressed. I did not want to participate in school activities at all. And the friends I thought I could share my struggle with also rejected and discriminated against me. I did not even know what stigma looked like until then.

Learning by Experience, Not by Choice

When I entered high school, our nurse didn’t know how to support someone on treatment and adherence. It makes you question the criteria they use to employ school nurses. We were not allowed to have medication in our dorms, so all my medicine stayed at her office. The result was missed doses, delayed timespans and generally poor adherence. Those missed doses forced my body to reject the first-line medication. By Form 4, my liver began to fail, and I was too sick to walk the corridors I once dreamed of conquering.

I still remember the first jaundiced glimpse of my skin in the campus clinic’s mirror. Three weeks of failing liver tests, a brain tumour, a stroke—I hadn’t even known these were possible complications. All because the cost of not knowing how to take my meds, how to monitor my viral load, and how to ask for help spiralled me into a near-fatal ordeal. Why did this happen? My guardian was too afraid to talk to me about my status, and all the information I got came from them. The first time we ever discussed my status was when I was transitioning to line 2 medication after the first line had failed, and it was a brief “you need to take your medicines or you will die.”

When Disclosure Becomes Weaponized

After university, I bravely disclosed my status to someone I trusted. Unbeknownst to me, he’d shared my secret with a friend. His friend Daniel kept the secret safe, waiting for the right time. As things happen, some relationships lead to happy ever afters, others dont. So when i ended the relationship with her friend, she who threatened to expose me at work and to make my life a living hell. I remember doing so clearly, she said, “I will ensure you never work in Kisumu ever again.” My mistake? I broke her friend’s heart. I didn’t even know it was illegal to disclose someone’s HIV status without consent. That betrayal cut deep—another price of ignorance, both theirs and mine. This sank me into another year of depression and isolation then the suicidal thoughts came.

From Isolation to Advocacy in the Queer Community

As a bisexual woman in Kenya, the stigma is doubled. My story isn’t unique, but it highlights why the queer community needs more safe spaces. Shame dies when stories are told—but those safe spaces are few and far between.

Knowledge Is Power

It’s time to close the HIV education gap. Learn and share as much information about:

• PrEP (pre-exposure prophylaxis)
• PEP (post-exposure prophylaxis)
• Treatment adherence and clinic checkups
• Viral load and CD4 count monitoring

We can’t afford the cost of not knowing what HIV treatment adherence means. Knowledge is our armour. Understanding PrEP, PEP, strict adherence, clinic checkups, viral load, and CD4 counts can transform HIV from a death sentence into a manageable condition.

Your Role in Ending the Costly Silence

Will you be the safe space you wish you’d had? Reach out. Ask questions. Share accurate information.

📖 Stories from Our Queer Positive Series

Stay tuned for more brave voices of LBQ community members—shining light on life, love, and resilience beyond HIV.