Living with HIV: Engagement in Care
When I was 21 years old I was in Walden House, a drug rehab program, and the doctor told me that I was HIV positive. I just started crying and my counselor was holding me. It was really traumatic because I thought my life was over. I was diagnosed August 23, 1993. And at that time I was a 24-hour prostitute and on crack, alcohol, and had a piece of a boyfriend. When I was 15 I became homeless and I started being very promiscuous and having unprotected sex. I also picked up an addiction and started prostituting. After prostituting I started feeling a little bit sick. Eventually I went to get tested and at 17 I tested HIV positive. I was diagnosed with HIV in 1989. My first thought was that how could this be me because I was not sick. I did not have a sense of real understanding of how powerful and how serious the virus is, so I didn’t seek treatment. I thought I had the flu at first, but it got to the point where I couldn’t eat and so I finally went to the emergency room, and one of the nurses just automatically just kind of knew and she sent me to the testing in the emergency room and they told me that I was positive for HIV. Being in my addiction, I wasn’t worried about care. I wasn’t worried about taking the medicines, you know, I was worried about using drugs and doing what I need to do to supply my drug habit. I was angry. I was in my addiction. I had this mindset that if I had HIV I just may well give it to everybody I have. That was then. I think differently now. I guess my feeling was denial and then I proceeded on getting care after that. It was pretty horrific for me, but I had good support. I had the support of the program. I had the support of the HIV counselor and a whole group of people to talk to. I was in drug treatment but I was not ready for treatment. I was ready to go to the clinic and to find out where my numbers were. It took me about two years before I even had my second or third blood test to see what my labs were. My doctor suggested that I begin HIV medications, and it was AZT, and because at that time it seemed like a lot of folks were dying from AZT, I refused to accept any kind of medical care. You know, why do all of that if I’m going to die anyway because everyone around me was dying. I got into some legal trouble and I was taken out of that really supportive environment to the complete opposite which was the prison system. You know, they were beating people up in prison because they didn’t want to catch anything. There was just a whole lot of stigma, so I had to keep it secret. It was, you know, I wasn’t even thinking about taking medications. I’ve tried on three occasions taking medicine. Two of those occasions have failed because I haven’t taken them on a daily basis. And I went into AIDS diagnosis. I had to take antibiotics in order for me not to get any other sicknesses. So now I decided to take my meds every day and they are helping. Because I am aware that T cells and the viral load is important, that education and knowledge is important, I take those tests every three months. I went back to the provider I had been to before. The whole office treated me like I was still in my addiction. That forced me to change providers. I was taught by a group of trans-women how to select a doctor. We had this huge workshop on selecting doctors, one that is sensitive to your needs. I think providers need to be a little bit more aware that people can change. It’s difficult, but it is possible. Me and my doctor talk about everything. I like him because he’s thorough, he’s attentive, and he is a specialist. I have an HIV specialist. A good provider to me would be someone who understands that even though some of their clients may be going through issues, they don’t treat them no differently. If they could be more trained around mental health as it relates to HIV, especially around trans-people. I’ve seen where people want to see a doctor but there’s only a PA around, so I think that might be a issue too. You should have comprehensive wraparound services. So I just wanted to go over a couple of things with you. The package comes with not just HIV. It comes with a lot of other factors, and in order to treat HIV, then the other factors need to be addressed as well. You can call anytime though. The provider needs to be strong and just understand what you’re going through. A good provider is one that listens, telling me what I should do, what I shouldn’t do, or I ain’t going to get it done. I don’t know that there are many providers who are HIV positive who can say I know how you feel. The one thing that I see that’s missing is the peer advocate piece because I think that in any system that you’re going through, especially when you’re diagnosed with a life threatening illness, you know, to have someone, someone like a mentor or someone that is just like you and they’ve gone through the same things and you have them to like guide you and tell you, oh, you might go through this, or let me help you, you know, navigate through this. And it could be over the phone. It doesn’t necessarily even have to be in person. I’ve experienced that where they are so busy but then sometimes you have to take time out to look at your client and see if they are really okay. Sometimes the healthcare system or healthcare providers might get overwhelmed with the weight of the responsibility of taking care of so many people, and that falls on us as patients to understand that. The first thing my doctor did was say, he sat there and he said, tell me who are you Bobby Jean. And he said, and don’t be shy, just tell me who you are. Who are you? And so for about an hour-and-a-half we had a very long conversation. The medical establishment that I dealt with, they were very concerned and helpful. They were very mothering. It’s been a very bumpy road in terms of my health, but overall I owe my life to my healthcare providers honestly. I think it’s important that care providers take time to talk about the person you just met and cry. You can’t make me believe that you can meet eight or nine or 22 people a day and walk out the room and not be affected by their story. Never give up. There’s still life. There’s great life. Just never give up.