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 had been sick for about six weeks prior, but refused to go to the doctor, claiming I was getting better. Eventually, on May 20, I went to an urgent care facility because I didn't have a primary care physician -- even though I had excellent health insurance. The urgent care doctor sent me immediately to the hospital where I was admitted with a blood oxygen level in the 70s. To be honest, I don't remember much of the first day, except everyone kept asking me if I had had a fever or chills to which I laughed and said I was a 50-plus-year-old woman in the midst of menopause and had not had a consistent temperature in years.
The first indication I had that I may have HIV was when the pulmonologist asked me if I had been tested for HIV. I said no, but at that moment I was sure that was what it was. I tested positive for Pneumocystis pneumonia (PCP), had a CD4 count of 4 and was immediately moved to the intensive care unit and began treatment for the PCP and was placed on oxygen as they tried to get my levels back up. 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 was coming in to see me in about 90 seconds. He 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 actually thought my husband knew about the affair. It was not a very populous country and lots of people there knew, but sometimes we try hard to ignore what we don't want to know. In all the years since we left, he never asked and I never offered any information.
But my husband didn't leave me when he found out, nor did he ever make me feel guilty. In fact, he attempted to blunt the situation and suggested he was possibly the one infected since he had had surgery when we were there -- I knew that wasn't the case. But his negative test put that all aside anyway.
The air was now clear, to my husband, daughter and mother, and eventually a few others, although not all got all the details. The good that came from the diagnosis: Well, I recovered from the PCP (there was some question whether I would initially). During the summer while I was recovering, my husband, my daughter (who is also negative -- she was 5 when I was infected) and I talked about many things that should have come up years before. We practiced honest conversations. We now take care of each other and are closer than before. I found a primary care doctor (my husband's in fact, since my illness also impacts him) and have been taking all medications diligently and following medical instructions. I quit drinking, which was easy to do because I was on so many meds that summer that everything tasted terrible. I started some regular exercise -- walking, then running, and now strength. We cleaned up our diet, and I lost weight, intentionally.
At 19 months post-diagnosis, but a long time since infection, I still spend time thinking about the "should haves," although, to be honest, I am not sure what I would have done differently. I do feel like I should have known better. My husband and I lived in NYC in the mid-80s to early 90s and both had friends and colleagues who died from AIDS. We both had many friends from our time in Africa who have since died from AIDS, but we hadn't really been following the research. I knew I should have had a test when we got back from Africa, but I thought after 15 years I had dodged a bullet, so to speak. Knowing what I know now, it's clear there were indications earlier on that I was infected, but in the 16 years between infection and diagnosis no one suggested an HIV test and I had switched doctors at least six times so no one noticed any problematic patterns. Finally, I also wonder if, in the more difficult times in our marriage (young child at home, stresses of moving, my struggle to get tenure, his employment struggles and just the rest of life), we would have stuck together. But now, after so many years of being together and making it through the tough times, we have moved forward stronger than ever.
Want to share your own "Day One With HIV" story of finding out your diagnosis? Write out your story (1,000 words or fewer, please!), or film a YouTube video, and email it to firstname.lastname@example.org. In the coming months, we'll be posting readers' "Day One" stories here in our HIV/AIDS Resource Center for the Newly Diagnosed. Read other stories in this series.