It was the 4th of July, a three day weekend, 2008. I was sitting out on the front yard with my family trying so hard to just be there in that moment with them as the fireworks shot off. But I was a mess. That whole week I could hardly eat, and anything I was able to get down wanted to come right back up. I kept telling myself, “Monday. I’ll find out for sure on Monday. This will be all over then.” By Monday I had waited twelve days to get the blood results back about of my HIV test.
On June 26th I went in to a local center for a free HIV Test and Hepatitis vaccination. There was a counselor that guided me through the process. After filling out a series a questions she used the mouth swab to test for HIV Antibodies and then had me sit back down in the lobby. And after a few minutes she called me back into the room to sit down to tell me my results. She explained that the mouth swap came back with a positive result for HIV antibodies. The counselor did her best to assured me that everything was going to be alright, and that there could be a possibility that results could be a fluke. To be sure they took a blood sample to be tested. I would need visit their offices in person for the results, which would take only one week.
I know I had to wait a week but still I called the clinic everyday trying to get a hold of someone with my results. It was all I could think about. It wasn’t until twelve days later that someone was able to confirm that my results were ready. But I would need to come in person to the clinic to receive them.
When I arrived I was still holding out hope my results were a fluke, I kept telling myself everything was gonna be fine. Alone with the counselor in her office she told me my results were positive, that I was HIV positive. She admitted that she had my results before July 4th, but she didn’t want to ruin my 4th of July weekend with “bad news.” I was in shock. I was so focused on trying to keep it together to even attempt to tell her what a terrible decision she made not telling me sooner.
The counselor set up an appointment for me to start the process of getting me into care. From the clinic where I received my results I was sent to see nurses at the Health District Office, then to a Social Worker at Clark County for insurance, then back to see the nurses about setting up an appointment to see a doctor with my new insurance, then to a organization called Aid for AIDS of Nevada (AFAN) to see a case manager so I could apply for Ryan White Part A (RWPA) assistance, another case manager for Ryan White Part B (RWPB) assistance, then to see my doctor again at his office at the Wellness Center. And at every appointment, every intake I filled out form after form, and more forms. Disclosure forms, proof of residence, of my private information, copies of my blood work, all these papers were just constant reminders that this virus was in my body. That it was a part of me now and it wasn’t going anywhere.
Every nurse, social worker, and case manager at all these appointments would tell me repeatedly without fail that I should never Never EVER tell anyone my HIV status. Most of them repeated almost the same statement to me that;
“Nevada is a right-to-work state, and because of the stigma associated with HIV/AIDS that if I was able to get employed and my status was made known to my employer I could be fired or would be the first in line to be let go because I have a pre-existing condition…”
“People may refuse to rent to me because I am HIV positive…”
“You never know how your partner or even your own family will react…”
I had no idea just how much stigma was out there toward people with STD’s, especially HIV. Honestly I didn’t know just how the rest of my family would react or how they would treat me if they knew I had HIV. I felt pretty assured that these case workers and medical providers were here to help me, and I could tell that many were in this line of work for more than just a paycheck. They were earnest about helping others going through this process.
But I was also told by these very same people that my HIV status and all of my many medical records, client files, whatever document’s I had signed or had my name printed on was protected by law. Everything was confidential, unless I told someone, no one would ever know I had HIV. That there was no way that it could possibly happen. I was still very overwhelmed, and when you have so many medical professionals telling you the same thing you start to almost blindly believe anything they say. They all must know exactly what they’re talking about. In this regard I only have myself to blame for believing them all so full-hearted. They all offered the guidance and support I needed, but did any of them have any real power to protect my information? If any of these medical professionals outed me in public or shared my files, what was I suppose to do then? Well I found out the hard way.