Getting Through 'Day One With HIV': Stories From People Who've Been There

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How did you get through that day you first found out you were living with HIV?

Whether an immense relief or the worst moment of your life, an utter shock or, ultimately, not surprising, it is likely one of the most intense days a person can live through. TheBody.com's readers have generously shared their experiences and reflected on how they've changed, and so that others would know that they too can survive and thrive following their Day One with HIV. You'll find more in our archive of Day One stories by members of TheBody.com's community.


On May 26, 2015, I went to the doctor to find out that I am HIV positive.

Once the doctor confirmed I was HIV positive, I felt this empty feeling inside. It felt as though my whole life was gone in a flash. I started to tear up at the doctor's office but stopped myself. I asked him about the next step I needed to take.

On day one, I also needed to pick up my adopted daughter. Since she is 14 years old, I was not really sure how to tell her. I figured the best way was just to come out and tell her. I don't like to hide things from her. When I did tell her, she thought it was cancer. I tried to explain it, but she still thought cancer.

I was scared, alone, and afraid. I came across this website and found hope for living with HIV. I know that I am not alone in dealing with this.


March 16, 2010. I remember it so vividly. I was in an in-patient drug treatment facility, 21 days sober and angry at everyone. When I got the news that my HIV test was confirmed positive, I thought I was receiving my death sentence.

I had never actually met anyone that was positive. Imagine, 34 years old, to have never known ANYONE and to be told that I was.

My roommate at the rehab asked to change rooms, people were afraid to eat and drink after me ... in 2010!! Unreal! So after processing the information for a few days, I started talking and started learning.


Here I was, 21 years old, admitted to a mental hospital for suicidal thoughts, and when I felt like I was on a somewhat steady path to stability, I get called into a room with a psychiatrist to tell me I was HIV positive.

I had a huge gamut of emotions ranging from sadness, to hopelessness, to regret, to depression. I will admit, I slipped into a heavy breakdown. Being told you have HIV in a mental hospital is not the easiest place to receive such news. I knew that from that point, I needed support from my family and friends.

I called my brother to tell him, and I received a phone call from my parents later that night. They only reassured their love for me, and that they would be there for me as I started this difficult journey.


In 1994 ... I walked into Charity Hospital's obstetric clinic, made my way to the nurse's office, and immediately knew something wasn't right; she wouldn't look at me. And then she said, "You have AIDS and you're going to die."

It was devastating, embarrassing, and heartbreaking. I'd finally gotten my life on track. I was so afraid of dying AND of having anyone find out my HIV status. I told my mother, sisters, and my children's father ... and no one else. I was also afraid because I was pregnant at this time.

I met an angel named Margot on that same day, she gave me HOPE! She said if I did three things, I could live: attend all doctor's appointments, take meds as prescribed, and learn EVERYTHING I could about HIV/AIDS.


In April of 1982 my symptoms got worse, and I went to the ER to see what was up.

"What's wrong with me? I'm 25 years old and I take good care of myself, but I'm always getting sick: sore throats, the flu, feeling lousy and now I'm losing weight. What's happening?"

The doc asked the med students to leave the room and closed the door. His voice got low and his tone became very serious. "What's your sexual preference?"

"I'm gay. Why?"

"Have you heard of A.I.D.?" (I remember that he did not use the "S" -- maybe that hadn't been added yet.)

"No. What's that?"

"It's a disease that we're seeing in gay men. It damages the immune system."

"Oh. What causes it?"

"We don't know."

"OK. What's the treatment?"

"There is none."

"So what should I do?"

"We don't know."

That conversation may sound pretty frightening, but actually it was the best thing that could have happened to me.


The Health Department kept calling my home for me to come in. I was like, sure. But I did not comply. They did not give up, even to the point of saying I can be charged if I didn't come in because I was required by law to come in person.

I finally went, I was so scared. I knew something was wrong -- but to what extent I had no idea.

I went home after a brief meltdown in my car. I was greeted by my 16-year-old daughter at the door. I guess it was written all over my face. As I suspected it showed already. My daughter knew something was wrong or happened while I was gone out. Right away my girl begged me, "Mama what happened? Please talk to me."

I told her. She said, "I love you Mama." She walked me to the office in our home where my boyfriend Craig sat talking with my best friend. She was my rock as I said those words out loud.

My life was forever changed. My boyfriend started talking to others and telling my status. My best friend did the same.


At that time I was kind of lazy about my testing. I would go to the doctor, they wouldn't ask, and I wouldn't push the issue. Even as a Black gay man, I didn't think I would be affected by this virus.

I was losing weight; I didn't feel good. I looked good -- you know, when people like myself start losing weight, we feel like Mariah Carey off the Jenny Craig diet. But it wasn't healthy.

I was sick as a dog. I was dying.

Waiting for my results was the longest 20 minutes of my life. I felt like a shadow just came over my head.

In my 22 years, at that time, getting the news I was HIV positive was the worst moment of my life.

The second-worst moment was having to tell my partner.


I am writing this on my 25th wedding anniversary, which is important to understanding how I moved forward from my AIDS/HIV diagnosis. I was diagnosed on May 21, 2013, at the age of 51.

I tested positive for Pneumocystis pneumonia, had a CD4 count of 4 and was immediately moved to the intensive care unit. ... The next morning the infectious disease doctor met with me for the first time and said they were running the HIV tests, but there was little doubt that was what it was.

My husband ... would need to be tested also. I had little time to process what I had just been told because I knew I would have to tell him. I was surprised about the diagnosis, but not really. I knew how and when, approximately, I had been infected. In late 1996 or early 1997, we were living together and I was working in sub-Saharan Africa, and I had a sexual relationship with another man. There was only 90 seconds between when I learned I had AIDS and when I had to tell my husband about the diagnosis and how I got it.


I was at work at a local manufacturing company, in my small hometown of less than 1,000 residents. The week prior, I had traveled into Nashville, Tenn., to see an oncologist, because it was thought I may have leukemia, because of the symptoms I had been having for the past several weeks. It turned out it was not leukemia, but something far more shocking.

The day was Thursday, October 24, 1991. The time was 11:07 a.m. My supervisor called me into the office, telling me that I had a phone call. The oncologist I had seen the week prior told me right away that the HIV test I'd had in his office had come back positive, I had five to seven years to live, and, he suggested I find a doctor who would treat me.

The room began to spin in slow motion.


I was 41 and taking my annual flight physical for the U.S. Air Force Reserve. ... I needed ONE year to be able to retire from the military.

When the flight surgeon told me I was HIV positive, everything came to a stop in my mind. The doctor then told me that U.S. Air Force regulations require that I be discharged immediately. He then told me that in his regular civilian practice he was an infectious disease specialist and he was not going to discharge me without a fight. He also told me that it wasn't a death sentence and that with proper treatment I would die of old age before I'd die of AIDS.


I am at work in my government job. I took my test two weeks ago. My doctor calls to tell me that I have tested positive. Then he says come into my office now so we can talk. I am crying; it is April of 1990. I have no idea what this means for me.

I went to my boss and told him exactly what I had just been told. This was the first time he would be so very supportive of me. I left work still crying and ran into my then 17-year-old son. He was doing some community service hours at the same facility I worked at. He asked what was wrong so I told him.

Once I left work, my son came to my co-workers and announced that I had AIDS and he did not know how to deal with it. By the end of Day One, I had learned the hard way about "disclosure."


I sat on the side of the bed, hung up the receiver and started crying.

In 1984, testing positive was a death sentence. When I finally did make it into the office, someone, some counselor or caseworker provided my prognosis. "Let's see, you're 21, so that means, approximately eight years. So you could live to see 30!"

Thirty came and went, and so did 40 and now 50. So everyone was wrong, including myself. I have lived to die for over 30 years, and now face the battle for my soul.

Meth addiction has the same strange and debilitating prognosis as HIV, in a way.


My first day with the virus was the 27th of December, 2007. I was supposed to have my baby on the 13th of December, but no sign of dilation or contraction.

I visited the hospital on the 27th of December and I was told I couldn't have my baby alone, only with a C-section to save his life because I had been discovered to have HIV. I was sad, but I accepted it, because I had to save my baby and give him a chance at HIV-free life.

That was my greatest joy that day: signing the consent form for the operation.


I made an appointment with my doctor and he told me I just had a bad flu and to rest and drink plenty of liquids. I decided to get a second opinion and this time the doctor, a girl my age and fresh out of med school, asked the pertinent questions and felt I should get the full (and expensive) panel of STD tests.

For moments that seemed like an eternity she was quiet and, with tears in her eyes, she looked at me and I knew. "I have HIV, don't I?" She nodded and said something that I didn't hear because the world stopped existing.

I didn't cry because I knew I would do that later. I surprised my doctor and myself with how stoic I appeared to be. I asked what happened next and she explained the details of getting me set up with a specialist, running some more blood work, and then gave me some pamphlets. I hugged her and comforted her and let her know I would be OK (to this day I laugh at that moment).


I took the call on a Thursday evening, and browbeat the nurse into telling me which test was abnormal. HIV was the furthest answer from my mind, but there it was. "You'll be dead in a week," I thought to myself. My wife came home, I told her and within five minutes we decided to divorce. I didn't want my kid to see me waste away to nothing, and the marriage was a shadow of its former self, so it was not a hard decision. Painful, but not difficult. Straight men can't get HIV, right?


Two previous HIV tests had come back negative. I'd had a serious "event" a month or so before. Projectile vomiting, drenching sweats, chills. I "knew" something wasn't right and it wasn't strep throat.

Yet, when I heard: "Your results came back positive for HIV" -- my mind went numb. The counselor was talking. All I heard was the blah-blah-blah like the teacher in "Peanuts."

I was a Buddy Volunteer. I'd helped guys change their partners' diapers. I've "been there"; now, I felt as if I was going to BE THERE.

Twenty-four years later, I'm here!