My HIV Journey: Connecting With My Infectious Disease Specialist
When I was 36, after a divorce and subsequent decade of being single, I ran into a monster. For three years, I was in an abusive relationship with him. It was hard and embarrassing in a lot of ways to be older and still fall into that kind of situation. I finally got out—but I took a lifelong illness with me.
I found another woman with him in our bed, and that was the last straw. I’ve always been health conscious, so I didn’t hesitate to go to the doctor and get tested for STDs. But I wasn’t expecting my doctor to tell me she was going to test me for HIV. I’d never even had an STD, so I was convinced I wouldn’t have to worry about something so serious. But she wanted to test me to be on the safe side, and that’s how I learned I’d contracted HIV.
Accepting My Diagnosis
I’ll never forget the moment my doctor told me I was HIV-positive. I didn’t really understand what HIV meant, so I remember asking her what we could do to get rid of the virus. I thought I could get a shot or pill and the nightmare would be over. But she told me there was no cure yet. I asked her what that meant, and she said, bluntly, “well, if you don’t manage your HIV, you can die.” I was in shock.
She told me I needed to tell my partner—the monster. And once I called him, he wasn’t surprised. He already knew he was HIV-positive. He’d had the virus for almost 20 years and never told me. I felt overwhelmed and naïve and terrified. I thought I was going to die. I didn’t know anything about how someone gets infected with HIV; I didn’t know if I’d infected my daughter by making her lunch or sitting on the same toilet seat. My world turned upside-down.
I felt ashamed more than anything else—I felt stupid for giving power to the monster and letting myself get into this situation. I now understand that when you’re in an abusive relationship, everything is cloudy and complicated. But at the time, my shame and shock over took me; it was horrible.
Finding the Right Specialist
My doctor told me I needed to see an infectious disease specialist to treat my HIV. But when I walked in the clinic, I wanted to walk right back out. The patients in the waiting room looked like lost souls; I could tell many were addicts and in a different place in their lives than I was. I felt so uncomfortable in that environment. And the specialist was cold and emotionless. I felt like she saw me as just another screw-up on the assembly line. I got no empathy or care. I went back to my doctor and told her, “we need to find some place where I feel comfortable getting treatment because I can see myself dying before I go back there.”
My doctor, thank goodness, helped me find a new infectious disease specialist in the same hospital where she worked. And I immediately felt more comfortable with my new physician. I felt like I was respected and treated with professionalism and care. Now, 10 years later, I’m still with the same doctor, Jay Kostman, MD; I even traveled back to Philadelphia to see him when I moved to Texas temporarily. From the first day I met him, he’s always treated me with kindness, respect and empathy—not sympathy, but empathy. His first words to me were, “I’m sorry that this happened to you.” With that, I knew I was in the right hands. He listened to my story and then walked me through the treatment process and what my future would look like. He gave me so many resources—his clinic’s direct number, the contact information of a caseworker he wanted me to work with, and details about getting my medication if I didn’t have health insurance. He took the time to educate me about HIV, explaining what my viral load was and why my CD4 count mattered. He also explained that I could live a normal life with HIV if I committed to treatment. When I left his office that first time, I felt empowered and confident that I could live with this infection and keep it under control.
The Right Specialist Made All the Difference
Today, I work as an HIV/AIDs advocate; I founded a non-profit called GIRL U CAN DO IT, INC, which provides health education to disadvantaged young people. I got certified in adult and youth counseling, as well as HIV and domestic violence prevention counseling. Every day, I work with individuals who are struggling like I once did, to give them the voice I didn’t feel like I had. I truly believe finding Dr. Kostman helped me make it to this point. If I had stayed with the first specialist, I think I would’ve ended up severely depressed and probably wouldn’t be where I am today, sharing my story and helping others. A bad medical provider can be a barrier to a person getting care. I’m so fortunate I found someone to guide me through this process with respect and compassion.
I want people to know how important it is to find the right doctor to treat your HIV. Go online and research your doctors; find out how many years they’ve been practicing and ask them questions when you see them. When I was first diagnosed, I asked a lot of “what if?” questions. I knew Dr. Kostman was going to be the right fit because he had the patience to answer those questions until he saw that I felt comfortable. Make sure your doctor sees you as an individual, not just another patient on their schedule. Everyone is different—and the right specialist will know there’s no one-size-fits-all way to care for HIV.
My message to those who have just received a diagnosis of HIV is this: even though this horrible thing has just happened to you, your life is not over. You got a curveball thrown at you, and you’re going to have to learn how to work it in a different way than you’re used to. But you can aspire to do whatever you want in life, because after you overcome the negative things that’ve happened to you, then you know you can do anything. It’s definitely a process, and it’s not easy. But if I can do it, you can, too. And you may not overcome this the same way I did; you’ll do it your own way. But as long as you’re still free, then you have another day to make your life better.
A native Philadelphean, Andrea Johnson is an HIV/AIDs advocate and the founder of GIRL U CAN DO IT, INC, a non-profit community-based organization providing awareness information and health education to disadvantaged young people and women. She’s a community HIV counselor and tester, host of the radio talk show “Real R.A.P.P. Radio,” and member of the Positive Women’s Network, an organization supporting women living with HIV.
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