My Diagnosis Story

I was diagnosed with AIDS in mid-June, 2000, in northwest Alabama. I was only 27 years old, with a marriage and three young babies. My youngest wasn’t even walking yet.

Shortness of breath and inability to eat

I was having severe shortness of breath for a while and experiencing an inability to eat, but I kept shrugging it off and refusing to go to the hospital. I could barely walk or breathe, but I pushed myself until I nearly collapsed at work. By the time I finally decided to see a doctor, I was literally turning blue. The nurse even said that I looked like a Smurf. I was immediately taken to the hospital in an ambulance from my doctor’s office, where I would spend the next excruciatingly long ten days.

The first few days were full of testing and bad news every time I saw the doctor. I was losing weight quickly and unable to find anything I could hold down. Test after test was frustrating or frightening, with few answers. The anxiety of it was overwhelming, and I didn’t really know how to handle it.

Days of testing: Frustration and fear

My previous doctor had been treating me for anxiety, although I told him several times that it wasn’t anxiety. I’ve lived with anxiety before; I know anxiety, and this wasn’t anxiety. As it turned out, I was suffering from a lack of oxygen. I had pneumonia, a life-threatening kind that most people don’t get: PCP pneumonia.

This took days to discover because no one thought to test me for HIV. PCP pneumonia is not a problem unless your immune system is compromised, so it doesn’t show up in other tests. I also had a severe yeast infection in my stomach, which was causing my appetite and severe heartburn issues. But finally finding the source of my problems was just the beginning of my problems.

The life-changing diagnosis: Hearing I had AIDS

I’ll never forget the numbness and silence ringing in my ears after hearing the diagnosis of AIDS. I remember talking calmly with the doctor, but I can’t remember what was said. I don’t remember hearing anything after that until I asked my first question, “How long do I have?”

“You’re not going to die this month, maybe not even this year, but five years will be pushing it.”

I had never been given a death sentence before. It’s one of those things that you never know how you’d react to until you experience it. I thought I was handling it well, but I didn’t sleep for the next seven days. I can tell you that the mind was not made to go without rest. But I was too afraid to sleep, convinced I might not awaken again. I was unnecessarily ignorant because my doctors were as ignorant about HIV as I was, which made for quite the terrifying experience.

This was four years after the introduction of antiretroviral drugs, but none of my healthcare providers knew anything about them. They simply stabilized me, gave me an appointment with an AIDS service organization in the state, and sent me home to die. Or at least that’s how I felt, and I wasn’t told any different. I was terrified. I thought I was dying, and soon. Why was I made to suffer like that? To live in terror thinking that I was dying imminently? Why were all my doctors so uneducated about this disease? Isn’t that their gig?

Living in fear: The impact of an uninformed medical community

Being diagnosed with HIV or AIDS is one of the hardest diagnoses to receive. How it is delivered can affect the rest of someone's life and therefore should be done with gentleness and compassion. Education must be given immediately. No one should have to live in terror anymore with today’s medications and the knowledge that we now have. The fact is that we can now live long, dignified lives and be completely untransmittable to others, so fear of HIV in today’s world is a little irrational if you know the facts, but only if we know better.

That’s why I became an advocate: to educate people about the modern realities of HIV and dispel any misinformation and misconceptions about the disease. No one should have to go through what I did, not anymore.