Surviving AIDS: From an HIV Diagnosis to a Lifetime of Advocacy

I was diagnosed with HIV in 2009 through a brief phone call that lasted only a few minutes. No one prepared me. No one connected me to care. No one explained what came next. I was simply told I was positive, and then the line went quiet. At the time, I had no idea that call was the opening scene of the hardest fight of my life.

Within a year, I was dying of AIDS.

Beyond the Textbook: The Physical Toll of Advanced AIDS

I went from 6'0 and 155 pounds to 90 pounds. My body was collapsing faster than anyone could explain. My CD4 count fell to levels most people only read about. My lungs repeatedly filled with liters of fluid. My intestines were devastated by MAC, an opportunistic infection so severe I could no longer absorb nutrition or medications properly. Thrush covered my mouth and throat. Blood clots formed in both legs and both lungs. Kidney stones arrived in waves so severe they caused kidney injury and repeated procedures. Specialists looked at me with expressions that said more than their words ever could.

More than once, I was told to get my affairs in order.

The Fight for Agency: Choosing Life When Doctors Accepted Death

Some doctors believed I would not survive. Others simply did not know what to do with me. I became a first for many seasoned clinicians. My case did not fit the textbook. Labs made no sense. Treatments did not behave the way they were supposed to. Every time one problem was addressed, several more seemed to appear.

I learned quickly that if a doctor had already accepted my death, they were not the doctor for me.

So I fought.

I was fed through TPN, an IV nutrition bag that ran nightly because I could not sustain myself by eating. I lived with PICC lines, chest ports, endless blood draws, infusions, and antibiotics harsh enough to feel like they were burning through the little I had left. My veins became so damaged that even today access remains a challenge. My lungs were drained by needle. My body became a battleground of tubes, scars, bruises, and medical improvisation.

And yet, somehow, I survived year one.

The Cost of Survival: Life After the Crisis

What many people never see is that survival is not the end of the story. Sometimes it is only the beginning.

I did not bounce back. I did not begin a miraculous montage recovery. I remained trapped in years of complications, trauma, chronic pain, malnutrition, bone loss, cognitive changes, and medical instability. I still live with many of those consequences today. My weight remains a struggle. My immune system remains impaired. My body still carries the cost of what happened.

A Shared Burden: The Role of the Caregiver

But I was not the only one fighting.

My husband stood beside me through all of it. There were nights he went to sleep wondering if he would wake up next to a corpse. There were years where he carried fear no one supported, grief no one named, and responsibilities no one offered to share. When professionals suggested I be placed into a facility, he quit his job on the spot and became my full time caregiver. He still is.

People often ask what resilience looks like. Sometimes it looks like staying.

There were other chapters that could each fill pages of their own. A mysterious abdominal mass wrapped around critical vessels that still remains too dangerous to biopsy. A sudden softball sized tumor appearing over my ribcage overnight. Multiple surgeries. Repeated hospitalizations. A stroke alert this year alone. New findings involving my aorta, kidneys, bile duct, and bowel. Even now, my story is not something I “had.” It is something I am still living.

Building a Life Alongside Illness

And yet, despite all of this, I refused to disappear.

I chose to build a life alongside illness rather than wait for health to grant me permission. Today I serve in HIV advocacy, nonprofit governance, community leadership, and public health spaces at the local, state, and national level. I work to improve systems because I know firsthand what it means when systems fail. I speak because I know what silence costs. I show up because many never had the chance to.

My story is not about being inspirational. It is about being real.

It is about what happens after the diagnosis. What happens when treatment is not simple. What happens when trauma outlasts crisis. What happens when someone survives, but survival comes with scars seen and unseen.

This is only a fraction of the full story.

There are chapters I have not told here. Moments of fear, anger, absurdity, love, betrayal, dark humor, and grace that cannot fit in two pages. There are truths about caregiving, stigma, medicine, and survival that deserve their own space.

If sharing the unredacted version could help even one person feel less alone, ask me. I am still here. And I still have more to say.