Lorraine introduces herself and describes what motivates her to advocate for families coping with HIV.
My name is Lorraine Brown. I am the family advocate for Maricopa Integrated Health System. I work within a program–the Ryan White Care Act, Part D program. Our program is named Community Strength Project, and how I got this job is very unique. First of all, I’d like to let everyone know that I am a woman living with HIV for 22 years, and behind this I did a lot of volunteering and doing a lot of things like really getting my story out publicly, whether it be a newspaper, television, magazines, but an individual found my story and offered me this position.
And what makes this job so exciting is that I not only get to meet other individuals like myself who are HIV positive, but we get to share the experience that as we are walking the path of this life to make it more unique. It gives us a way of saying, “I am not alone!”
I was infected in my 20s. I am a mother of two children, and the man that I was with was the father of my children and believed that he was not aware of his status, did not know that he was infected, and it was passed on to me, and I did not know that I was infected until I got very, very sick.
And I remember when I first got my diagnosis that I thought, “Well, how could this happen?” I didn’t fit any of the things that I had heard about. One of the things I remember when I heard about it on television is that it was a gay disease, and I remember saying well, I remember telling the doctor that I wasn’t gay, so how did I get this disease?
And he said, “Well, it wasn’t just for gay people,” and I am like, “Okay, so why haven’t they released this then?” And he says, “Well, they did release that it was also for people who shared needles or IUD users,” and I said, “Well, I don’t do that either, so how did I get this disease?”
The physician really couldn’t explain it because he really didn’t know much about it. Probably the first five years of my diagnosis I was really more dealing with just the fact that I was dying, not really knowing where to go or how to get help or really deal with the issue that I am positive. And I think because of that, I more or less was just waiting really to die, and when that didn’t happen it was like, “Okay, what now?”
When I asked the doctor, ”Well, how long can I live with this?” He sat there and he said, “Five – maybe ten years.” So five years went by, still I haven’t died, but I am thinking I am dying; I am doing things like maxing my credit card.
I even remember going through the process of not wanting to take medication because I felt like the medication was making me more sick and I thought, “Well, if I’m going to die, what’s the use of taking it?” So I had really convinced myself in my own mind that I am dying with this disease.
When I finally snapped out of it, which took a while. I mean, what it really took was me meeting other women. Me meeting other women and talking to other women and hearing women’s stories, and when women were sitting there telling me how long they had been diagnosed, it was like, “Wow, longer than ten years.” I was like “Wow,” and I was quite impressed. I was like, “So what you are telling me is I could actually live longer with this?”
And like I said, I think I got more information from a woman who was infected than I got even from a physician because I think at that time physicians were really puzzled and struggling with this disease because they didn’t know a lot and they were still trying to figure it out what they really could do with this disease. How could they really manage this disease, especially now that it was hitting women and children, you know, because back in their minds it was a gay disease; it was only men. Now they’ve got women and children and it’s like, “Oh, wait a minute; we’ve been misinformed. We don’t know where to go from here.” You know, so I think most of my information I got from other women, and they inspired me.
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