This Positive Life: An Interview With Sarah
July 15, 2009
Sarah, let's start from the beginning. Can you tell our readers how you got HIV?
When I was born, my mother had a pretty bad C-section [cesarean section]. As a result, she had to get a blood transfusion, and the blood transfusion was tainted. So she was unknowingly infected and gave it to me through breast milk. [Click here to read more about mother-to-child transmission of HIV.]
She was nursing you, and she passed it on to you without knowing that she was positive.
That is correct. She also unknowingly gave it to my father. They didn't know until a few years later that she was infected.
How did they eventually find out that they were HIV positive? And how did you discover that you were positive?
My father was trying to donate blood at a church blood drive event. He got a paper back saying that he was unable to give blood; this was probably 1986. So he got tested, and couldn't figure out what would be wrong because both of my parents hadn't been very promiscuous at all or ever done drugs or anything that was risk-related for HIV.
He figured out then that he was HIV positive. Then my mother got tested also, and I think they received a letter from the hospital saying that they might have been infected. Although it had been 1984 when my mother received the transfusion and they should have been testing the blood, I don't think they were testing every single person quite yet.
So this was a couple of years after your mom was infected through this blood transfusion? There was a couple of years when your family had no idea that they had been infected.
You say that the hospital sent them a letter. When did he receive this letter? Was it years afterward the transfusion took place?
Since my dad was tested when he was giving blood two years later, I'm thinking that it was probably two or three, maybe even four years later that they got the letter saying, "We might have had an oopsie."
That's crazy. Why do you think there was such a long delay?
I actually can't talk about the place too much, but I can say that I don't know that they were on top of things.
Did your parents decide to test you as well when they tested positive?
They actually waited a while. When I was probably eight or nine years old I had some major problems with my tonsils which were, I guess, fairly abnormal. So my mom decided to have me tested then, against the will of my father.
Do you know why your parents waited so long to have you tested for HIV?
I think my mother wanted to have me tested earlier, because she always felt that there might be something wrong with me also, but I think my dad wanted to put it off as long as possible. My dad didn't want to deal with it. I wasn't ever terribly sick, so they just waited until then.
Do you know why your father wanted to put it off? Do you think he just wanted to believe that you were well?
He's very open about [HIV now]. What he's not so open about is how he felt then. It was a very scary kind of epidemic [back] then. Even now people aren't that [understanding about HIV], but in the '80s it was a lot worse. People would say you couldn't go in the swimming pool if you had HIV. People had to move and stuff like that. I think my father's decision to put off testing me was more of a protective denial -- he didn't want to deal with it type of thing.
So you got tested when you were nine or 10?
When you went in and got tested, did you understand what was going on?
Actually, I thought I was going into the doctor for a checkup and I had to get blood work done. I didn't really know anything about what was going on until a couple of months later. My dad didn't want to tell me then either, because he wanted me to have a normal life.
I was actually home-schooled for a portion of that year, because when they found out I was HIV positive the private school that I went to didn't have any policy [about HIV-positive students]. My parents wanted to talk to them and get a policy made before I went back. My dad didn't want to tell anybody, so my mom wasn't supposed to tell me. But one day when we were doing our schooling she kind of broke down and decided to tell me.
How did you react? Did you understand what she was talking about? You were really young.
Yes. I was nine or 10, and I knew that there was something wrong with my mom because she had had problems. She had shingles. She was really sick for a couple of years when I was six up until I was eight. She was always pretty sick, so I had an idea that there was something wrong with her. But I had no clue that there could be something wrong with me. I kind of freaked out. I was scared that I might die or something. I didn't know a whole lot about the disease.
But you had heard of HIV?
Not really. I think I had heard something, maybe here or there on TV, but I hadn't heard a whole lot about it.
Did she tell you at that time that your dad also had it?
You know, I can't recall. I think she just said, "You and your dad, you're OK, but we have this disease." It was, I don't know, traumatizing. [Laughs.] I disassociated a lot throughout my childhood.
What happened after that?
You know, to be honest, I don't think I processed a whole lot of things for the majority of my life from then on because a lot of traumatic things happened after that. Just to get through [I told myself], "OK, this is happening. I'm just going to get through this." Now I'm kind of paying for that emotionally. It's like, "Oh, wow. I really suppressed a lot of feelings."'
Are you just starting to process this as an adult?
Yes. Stuff is coming up now that I remember. [I think,] "Oh, wow. That was traumatic and I didn't even really react to that." It's starting to come out now for me.
Do you have a support structure to deal with these topics as they come up now that you're older?
Not really. I think I'm starting to. My family has helped me as much as possible, and I have friends also that have helped support me. My father hasn't been encouraging at all but my mother was always been supportive of what I wanted to do in life. Obviously, my husband is my big support team for me. Other than that, not really.
Backing up a bit: When your mother told you that you were HIV positive, how did you tell other people?
I actually wasn't allowed to tell other people at first. My dad, for whatever reason, didn't want us to tell anybody for a while. But then, after a year or a couple months, I was able to tell my one friend. She had foster sisters and brothers and stuff like that, so she knew what it was. She thought, "Crap, you're my friend. There's something wrong with you," but she was never weird about it. She didn't ever hesitate to be near me or with me.
That's great. She was just a little kid, right?
Yes, she was my age. She was just little.
Did her family know?
After the time when we weren't really allowed to tell people, my dad decided that he would go around and pretty much tell everybody through [public] speaking, despite me wanting to be able to tell people myself. That was his way of coping and trying to help other people I guess [understand HIV].
Basically, after a while, everybody knew we were HIV positive because my dad pretty much told everybody there through chapels or whatever, because [I was going to] a Christian school. I did get to tell more people as I got older, but in elementary and middle school I didn't really have to tell anyone. They already knew [because of my dad's outspokenness].
What caused this big shift in your dad, from wanting to keep HIV under wraps to talking to everybody about it?
I think after a while he sort of wanted to use it as a ministry maybe, a way to help other people or to make people aware [of HIV]. I think we were realizing, as we told family and different people about our HIV status, that people didn't really know very much about it. Maybe it was more like an awareness type of thing. He came across very preachy though.
It sounds like it took him a few years to get to that point. When did he first start talking about it?
I think in the early '90s he started talking about it more. I think in the '80s he was afraid that he would have to move and leave.
Was he worried about experiencing discrimination?
Yes. Back in the '80s it was considered a disease that was in the homosexual community. My parents are pretty conservative religious people, so for them to have the disease was ten times worse. I think that had something to do with it, too.
Why do you think they thought it was worse? How did they feel about HIV?
Not sounding bad, but it was more [associated] with homosexuals, so they were afraid that people would think they did something "bad" when they were younger or that maybe my dad was a homosexual, when he was actually straight and married. In their religion, that would be something that would be enough to reject them and have them move.
How did their church ultimately react when they came out about it?
I remember my dad speaking at the church where we were at at the time. Some people were kind of stand-offish and not sure about it. Some people were encouraging. I didn't really react that much, and it kind of irritated me because everyone was feeling sorry for me when I just wanted them to treat me like a normal person and be my friend.
But, they didn't kick him out or anything like that and they [didn't have] to leave. Now, I'm sure he had a different perspective. From my perspective it was fairly good, but it wasn't open arms either.
How do you feel about the church now? Do you feel like you get support there?
"I went to a Christian high school and got slammed pretty bad there for having HIV, so I've been a little more hesitant to get back into any type of organized religion."We go to a different church now. I go occasionally, and I feel like I should go more. But I went to a Christian high school and got slammed pretty bad there for having HIV, so I've been a little more hesitant to get back into any type of organized religion.
I still have my faith and values and such, but I'm still a little hesitant to go there because I have not really received much support from churches. But then, on the other hand, they didn't reject me like I was at the Christian school. I just haven't received much support from the Christian community.
Can you tell me what happened with the schools you were in? Earlier you mentioned that you had to be home schooled for a while. How did the schools you went to handle your HIV status?
At first it wasn't a huge deal for me, but in middle school a lot of people were pretty ignorant. They didn't know a whole lot about it. They made fun of me -- because everybody thought it was just among homosexuals [who could have HIV] for some reason -- [saying] I had to be a lesbian because I had HIV, which didn't even make sense.
One principal was very adamant about talking about how homosexuality was wrong. I don't know why that was his focus at all, but he would talk about that and HIV a lot in a negative way. That affected me. Preachers were coming in and comparing AIDS to leprosy -- just completely uneducated and making me feel pretty unaccepted.
My friend and I -- the same friend I had when I was little -- we shared a lollipop or something. Our principal freaked out and made my friend feel horrible even though she couldn't get HIV from doing that. Just stupid stuff like that went on all through high school. I'm skipping ahead, but dating in the high school was horrific.
Was it possible? Were you able to talk to the guy you were dating about what was going on with you?
Like I said, my dad had told a lot of people or spoke before. So people pretty much knew already. The guys that I dated, I could talk to them about it. Nobody, in high school anyway, was like, "Oh, I don't want to date you because of it." It was all their parents. They were very uncomfortable with their kids dating me because of that the HIV, even though, for religious reasons and other reasons, physically I didn't do much with the kids at all, so there was no way for them to get it. They were just very uncomfortable and very ignorant and mean about it. They would say things like" she doesn't have a future" or "she should find one of her own kind." Those statements were from a preacher, so I guess you can kind of see why I get a little sheepish about church.
Was this true throughout your whole school experience? Were there any bright spots with dating?
I would say, as much as it hurt, one of the good parts was that the people who were my age, even though eventually because of their parents we broke up or stopped talking, it wasn't like the guys ran away from me right from the start. They tried to [date me], but then one way or the other with their parents or this and that, it just didn't work out.
Do you think this had anything to do with the particular kinds of schools you went to? Do you think it would have been different at a non-religious school?
I would hope to think that in a non-religious school there would be a little more acceptance because there tends to be a little bit more acceptance in secular education. Not necessarily that it's better or worse, but I would tend to think that there would be people there who would be ignorant also because you're always going to have people who don't know about things.
Was there good sex education in your high school?
[Laughs.] We didn't have sex-ed in high school. It was strictly abstinence. It wasn't really talked about at all, which I think ... Well, I think it's more of a political thing now then it needs to be, but anyways ...
Do you think that lack of sex-ed might have had an impact on your fellow students and their parents?
I don't know, it's definitely possible. I tend to come from the standpoint of, yes, we should be educated, but people should also strive to make good life choices.
You mentioned that your father gave some testimony. Did he ever come and talk to your school about HIV? And did that make anything better?
Yes, he did. He came and he would say, "You can't get it through this. And you can't get it through that." So yes, actually, now that you mention it, he did try help educate people, but then again, that was only the kids. The parents weren't there for that.
What effect do you think all this has had on you? Did it get any better when you went to college? Do you feel more supported now? What do you think having this childhood with all this contention has done to you?
I think it has affected me in a major way emotionally -- good and bad. I'm a very strong person now because of it, more educated and more life-experienced than a lot of 23-year-olds because of it. On the other side, it has affected me pretty harshly in some areas. So, good and bad. I am starting to feel more supported now as I am able to branch out into different kinds of communities. I think I am kind of a rare breed.
You said that your mother was ill throughout your childhood. What was that like? How did that affect you and your father?
When I was younger I was a homebody, pretty much, because I was worried a lot of the time because I didn't know what was wrong with her. I was worried a lot of the time that she was going to die. She was always pretty strong. She always seemed to bounce back, but there were a few times when we were pretty worried about her.
How did your father react to all this? So how did he support you?
When we were younger they fought a lot. I think they fought a lot because they didn't know what to do about things. Also, she wanted to tell certain people and he didn't think they should tell them. He was also gone a lot on business trips and stuff like that. He tried to be supportive in his own way I guess. However, he wasn't positive and never thought anyone would make it too far.
Did it get better as you got older?
I would say it's a little better now. He still doesn't have much hope for the future, unfortunately. He has his own issues, we'll put it that way.
How is your mother now? Does she have opportunistic infections?
Yes. She had shingles when we were younger. My brother actually died in 1995, not from anything HIV related, but after that we thought we were going to lose her next because she was pretty skinny. I'm not sure of the illness she was having, but we thought she was going to die then, too. Of course, I wasn't very open about anything then. I actually didn't talk for a while. But she bounced back. I couldn't even tell you all the medications or all the guinea pig things that she has tried over the last 23 years. She's pretty much tried all the stuff you can try, but now she is doing well. She was off medication for a little bit, and now the regimen she's on seems to be working very well. Her numbers are good, so everything now seems to be going pretty well for her.
Great. Do you know if has medication resistance? Is that part of the problem?
Yes, she has had some resistance to the beginning [medications]. Viracept [nelfinavir] and things like that weren't working for her anymore.
You said you didn't talk for a while. Do you mean you weren't talking about HIV?
No, I mean I didn't talk. [Laughs.] After my brother died, I didn't talk for a few months to anyone.
Can you tell me more about that?
My brother died when I was 11. It was a freak kind of thing. He got meningitis, pneumococcal meningitis. It took like 30 hours, and he was dead. Having just found out about the rest of my family when I was 9 or 10 and then this happening, I think I just shut down. I was angry, and I just didn't feel the need to talk anymore, so I just didn't talk for a couple months
Wow. How did your family process your brother's death? You started talking again. Did they draw you out?
Actually, my sister decided that my parents should get me a puppy for my birthday when I was turning 12 as a therapy kind of thing because I wasn't talking much. That helped draw me out more. That's actually why I am interested in pet therapy now. My mom always tried to talk to me.
Actually, I didn't go back to my regular school, so I think that affected it some, too. It wasn't planned out that way. It just kind of happened. After that year I went back to my Christian school where I had more friends. I think that helped, too. I eventually started talking and getting through things better. I am not sure if my dad has processed it much. Not that he should get over it, but he is still pretty stuck on it.
How old is your sister? Is she older or younger?
My sister is six years older than I am, so she's 29.
Do you have any other siblings?
No, I just have my brother and my older sister.
Your brother who passed away?
So your older sister is HIV negative?
Do you know how that's been for her, being the only person in the family who is negative?
I know that some people have told her to just to move on with her life, have her own family and not worry about her other family because she's not going to have them -- which hasn't been true. She actually found out about everything before me because she was older and she had seen stuff on TV that kind of matched up with what my mom was doing, like getting her blood taken. So she kind of figured it out on her own.
It was obviously a major thing for her because it was half of her family. I can't say all of the ways that it affected her. She tends to be more quiet about it too. But she'll talk to you about it if you ask her about it.
You mentioned earlier that your father hasn't taken any HIV medications.
How has he managed so long without medication? He's been positive for over 20 years. That's kind of a miracle.
Yes. I think that through his faith and probably some type of unique genes he has managed to stay alive all these years without it. He hasn't done any clinical trials -- he probably should -- to figure out if he has a specific gene that's been helping him. [To read more about long term non progressors, click here.]
Do you know if his viral load is undetectable?
I don't believe it is anymore. I don't think it's very high. I think it might be at 1,000 or something. It's not very high.
Do you know about his CD4 count?
I think it's been between 300 and 500 pretty much the whole time. I think it was higher in the first couple of years and has gotten a little lower, but it hasn't really gone below 200 or 300. It's been right in there -- 300, 400, 500.
Does your family all go to the same doctor?
We've gone to several doctors, but, yes, we all go to the same specialist.
And the HIV specialist hasn't recommended that your father start HIV medications yet?
No, it seems like also in me too, our bodies have gotten to a certain point where the disease sort of stabilizes. The specialist doesn't really understand why or know why, but we seem to be able to stabilize the disease in our body. It hasn't gone any further than that, so he hasn't really seen a need [for him to take HIV meds] yet.
Great. How has your extended family dealt with your family's HIV status?
My mom's mom was pretty good about it. She was accepting. It was scary, but she was pretty accepting. My cousins on my dad's side have been some of my best friends through everything. They've been pretty supportive. As far as the rest of my mom's side -- she has a couple of brothers and sisters -- no one's been really not supportive, but they've been a little stand-offish for whatever reason.
Do you think your extended family is uncomfortable with HIV?
I think most are OK. They are all OK with the whole situation.
How have your feelings about HIV changed over time?
I think I'm a little more accepting of it now -- as accepting as you can be. I think I'm starting to dealing with it more now and trying to deal with it in positive way and not just be angry about it.
How do you do that? Who do you go to for support?
Family and friends. Doing interviews like this. Then I was thinking about writing a book. Different things like that. Actually, I would like to be more involved with children. I know that I would have loved to have been able to see someone who went through it as a child and could still do pretty much normal things as they got older.
You talked about working with other youth and talking to HIV-positive children. What would you say to someone who just found out that they're positive, let's say another young person?
I would say not to lose hope. Pretty much no matter what people say, you are going to find people who are going to put you down. I think you should keep a positive attitude. HIV is not so fatal that you're going to die in a couple of years. It's more manageable now, more of a chronic thing. It's not the end of your life, and you shouldn't stop anything that you want to do.
How long do you think it takes to process an HIV diagnosis?
"I can't say that I've fully processed my HIV diagnosis because it has affected me in different ways at different stages of my life."I don't know that I could put a number on how long it takes to process it. It really depends on what time in life you get it, how old you are. For myself, personally, I can't say that I've fully processed my HIV diagnosis because it has affected me in different ways at different stages of my life. If I want to have kids, it's going to affect me. I think you process it in different ways throughout the whole trial.
You think it's an ongoing process.
Backing up just a little bit, can you tell me a little bit about your town? Is the town you're in now the same town you grew up in?
Pretty much. It's a neighbor to the town where I grew up. They're right next to each other.
What is that area like? Are people in the community pretty educated about HIV? What was it like growing up in your area and being HIV positive?
It's fairly country. Most people are not educated at all. It's kind of Dutchy [as in Pennsylvania Dutch]-- just everyday life, kind of. It's nice in one instance and then when it comes to people who are different or have different experiences, people are a little bit more reserved about that. Not so much now, but growing up people were less educated.
You think that things have improved in terms of awareness of the epidemic?
Oh, yes. Yes.
You said that you work for your father now. What is that like? What does the company do?
They do a lot of things. They do marketing and consulting and production type stuff like surveys and research, all sorts of stuff.
Can you tell me about your husband?
Yes. He is ... wonderful! [Laughs.] I started dating him two years ago, almost two years ago. I dated someone before him for two weeks or three weeks, and when I told him about my HIV status, he basically ran away from me. So I was a little bit cynical and wasn't really looking for anybody [when I met my husband], and that seems to be when you meet that someone. [Laughs.] But anyways, I met him where I teach swim lessons. We were meeting for a couple of weeks, going on dates here and there, and he wanted me to be his girlfriend. I said, "I don't think I'm ready for the girlfriend thing yet, and there's stuff about me that I don't really want to talk about right now."
So he was like, "What? OK."
My thing is: I like to tell people [my HIV status] before I get too involved. People have different preferences, but I like to tell people [early]. That way I can find out a lot about them when I do that, and I can also give them a choice.
I was really nervous about telling him because [I was thinking], "I just can't handle any more rejection right now. I'm just going to fall over here." [Laughs.] "But, no," I thought, "I need to tell him. It's the right thing to do."
So I sat him down and I was talking to him. I almost started crying. He asked, "What's wrong?"
I said, "I've had this HIV since I was born and yadda, yadda."
He said, "That's it?"
I said, "What do you mean, 'That's it?' This is like a big deal!" [Laughs.]
"Well, I thought you were going to tell me that you have kids or you are dying or something."
I'm like, "No!"
So anyways, he said, "I'm going to process this," but he was very educated, and he knew how you could get it and all that stuff. He was pretty much fine with it.
We were older (he's two years older than I am), so I was kind of worried about the parent thing just from past experience, but [I figured] we were older. He didn't tell his parents for a while. He said, "I don't need to. It doesn't matter. They aren't going to have to deal with it. I'll tell them in a little bit." I left it to his discretion.
When we got pretty serious, he decided he would tell his parents. They were sad, but they weren't like, "Don't date her!" They really liked me. They said, "We're really sad for her. But we really like her, and it doesn't affect anything." So it was really great. It was an awesome thing for me. I love him to death, and he's been awesome about it. I worry about things, but we protect ourselves and we've been good. Everything's been really great with us.
That's awesome. Do you guys want to have kids?
He does. And I do sometimes. [Laughs.] Sometimes I don't. I can just borrow my sister's kids. I think eventually, probably in five, 10 years, we'll think about it more. Right now, we just got married this summer, so it's not a priority. We think about it, and he says, "If it's going to be a big deal, we can probably try to adopt." We don't have to have any, so it's up in the air.
You mentioned earlier that your health has been like your father's, kind of stabilized. How has your health been generally? You were sick when you were little. How has your health been since then?
I have been on medication before, actually, when I was in my early teenage years. And then when I was 19 or 20 I decided that I didn't want to take them anymore. I didn't go to a specialist for a while, for about a year, I think. Then I went back, and I went to a different specialist. We went to a specialist in Baltimore and all these different places. Then we finally found one closer to where we lived.
[The first doctor I saw] wanted to put me on all these medications, kill me with medications -- that's what I thought it was like, anyway. I didn't want to do that, so I went to the same doctor my parents go to now. He said, "Just come every couple of months and we'll monitor you. I don't think there's a need [for medications right now], especially since your body is kind of stabilizing it."
It's been pretty good. My T cells have gotten a little bit lower, but it seems like they are staying at one spot and that my viral load is staying at one spot, which isn't very high either. He's pretty good about medications and whether I should be on them or not.
[Editor's note: Since the interview, Sarah restarted treatment and is currently taking Isentress (raltegravir),Truvada (tenofovir/FTC), Norvir (ritonavir) and Prezista (darunavir). Her last CD4 count was 360, and her viral load is almost undetectable.]
Why do you want to stay off of medications?
Some of the side effects are pretty crappy. They are better now than they used to be, a whole lot better then they used to be. [The HIV medications] help, but they also put toxins in your body. I think it's just better to stay off them as long as your doctor feels it is allowable. If you absolutely have to, then go on them. Also, in terms of resistance, too, I just think it's better not to wait until you are dying or anything, but to wait until you really need to go on them, so that you have more chance to avoid resistance to medications.
What medications were you on when you were younger? Do you remember?
Let me think. I was on Kaletra [lopinavir/ritonavir], Viracept [nelfinavir], Viramune [nevirapine], and I think that was it. I think I was on a regimen when I was 12 that was huge, 30 pills, but I do not remember all the names of them.
But it sounds like you haven't really been sick.
No, not really. I had a little bit of shingles, but nothing like what my mom had. They went away really quickly. I had my tonsillitis, but most of the stuff was generally fairly normal. I was never really very sick.
That's great. Do you personally have a health regimen that helps you stay well? Do you work out? Do you eat anything special?
How do you stay on top of the latest information about HIV? Do you get magazines? Do you go on the internet? Do you go to a support group? How do you stay connected to the HIV world?
I get links to the POZ site. Also, I was researching different sites, and that's how I came across The Body. That's pretty much how I stay in contact with the HIV community.
How do you personally choose when to disclose to somebody? We talked a little bit about dating, how you told dates, but how long do you usually wait to tell someone? How can you tell if it's somebody you want to talk to about HIV?
It's funny. It would be lovely if there were a set parameter for that. [Laughs.] Most of my friends know. There are some that I'm not sure if they know or not. I actually did get to tell one person in high school, one of my best friends in high school. She had come over to my house, and I thought, I should probably tell her because my dad actually wrote a book and had stuff there with it, so I didn't want it to be a surprise. So after I was friends with her for a couple of months, I had a little discussion with her about everything. She was just kind of like, "Oh, yeah, my one friend such-and-such has that. Oh, yeah, OK." [Laughing.] It's kind of funny. It's either one way or the other. [Some people say,] "Oh, yeah. No big deal." Like, what?
The stories you've shared about disclosing, a lot of them have been pretty positive. Your husband's reaction was amazing and wonderful. Have you ever had a bad experience?
Yes. This one guy, we went on a couple of dates, and I decided I should tell him. He said, "OK. That's fine." I explained it to him and then I left. He called me, "I need to talk to you. I can't do this."
I'm like, "OK. Why?"
He said, "I just can't do this." Then he left. And that was all.
How did you react? Did you get to respond to him at all?
I was kind of mad. I said, "Your loss. See you later." [Laughs.] That was about it.
Is that really how you felt: There are more fish in the sea?
Not at first. I was pretty upset at first because it was another person who doesn't want to be my friend. He actually did want to be my friend, but my friends [have to] accept me. So at first I didn't react very well. I was pretty upset.
My dad then decided that he would help me out with this whole dating thing. It's kind of funny, actually. He went on one of the positive dating sites -- I forget which one -- and decided he would make a profile for me and then tell me about it, so that I would find somebody.
So I was like, "Great, dad." Some of the stuff he put in my profile ... I don't think I would have put all that. But, anyway, I did actually meet one person through the site who was HIV positive. He was newly infected. We sort of talked for a while, but we were at completely different stages because I had it my whole life and he was starting the process of figuring out, "What do I do?"
He was kind of in denial. We were friends, but we lost contact. I would pressure him to go to the doctor. He would push it off. I told him you can't do that. So we lost contact, but it was nice to meet someone my age that had HIV also.
It sounds like your husband has been really, really supportive. How does he support you, and how does he deal with your HIV status?
If he can, he'll go to the doctor with me. He supports me, because I'm just starting to deal with things now. He's just very supportive and tries to help me and talk to me as much as possible.
Do you ever think it would be easier to have a partner who was positive?
Yes and no. It might be easier in the sense that you don't have to worry about protecting them, but at the same level I still don't know if they have a lot of research about [whether HIV partners who] have different strains of HIV can give each other different strains. [Click here to learn more about HIV superinfection.]
I think they recommend that you still use protection.
Right. [Being with a positive partner is] different, but it's not that different. Marrying someone who is HIV positive also would make it harder to have kids. There are pros and cons to both. Obviously, I married someone who is negative. That just happened to be easier for me.
Shifting gears just a little bit, I know you've talked a little bit about youth and HIV-positive children. What are your fears and your hopes for people your age as they face the risks of HIV?
I would say that I have two major fears for them. That is, I think it will be better for kids now, being infected and just living a normal life. [I hope that] people will not be self destructive. By that I mean going out and harming themselves or harming others. I think that sometimes when certain people get HIV it's out of a risky lifestyle. I think sometimes [being diagnosed with HIV] even pushes them into a riskier lifestyle because they think, "Oh, well. I have this, so it doesn't matter what I do." I would say that my hope is that people would make the right choices towards them to treat them properly, and also for HIV-positive people to make the right choices, not to harm themselves or anyone or to think that they can't have a life.
What advice would you give to another young person who is positive if you met them at church or at work?
I would just say they should make sure they go to the doctor when they need to and that if they need to be on medication that they're faithful with that. [I'd tell them] to keep doing whatever they want to do. If they need help, they can talk to me or whoever.
What issues do you think children who are diagnosed at birth or as children face issues that are different from people who are diagnosed as adults?
I think that for children it's really hard to understand. It doesn't really take away your innocence, but it takes away part of your childhood because you have to grow up pretty fast. You know what I mean? You have to face stuff that is hard for grownups to deal with.
I guess it depends sometimes on how you get it. Some people, I think, know they are at risk for it, and when they get diagnosed it's still pretty horrible, but it's not a huge surprise. I think that while it's not easy for anyone to understand it, it's easier for them to understand as an adult.
"A kid hasn't really lived yet, so it's pretty traumatizing to find out you're HIV positive. As an adult you've had some life ... when you're a kid you have to worry if you are going to have much of a life at all."A kid hasn't really lived yet, so it's pretty traumatizing to find out you're HIV positive. As an adult you've had some life, now you just have to worry about whether you are going to make it to the rest of it. When you're a kid you have to worry if you are going to have much of a life at all.
How do you think your life would have been different if you hadn't gotten HIV?
I think in some ways, because of the community I was brought up in, it wouldn't have been good because I wouldn't have been as a accepting of people, if you get what I mean. Not that everyone in the community or the religion that I prefer is horrible or anything, but sometimes I think they can tend to be a little less accepting of people. They think things are a certain way and that's how they should be. I don't know if I would be as accepting of people as I am if I didn't have HIV.
On one hand, I think I would be a little bit less emotionally disturbed. Not that I'm mentally ill or anything. That's the only word I can think of ...
Maybe a little less fragile?
Yes. I wouldn't have as many emotional problems as I do, but on the same level, I don't know if I would be as strong either.
If you don't mind my asking, what emotional problems do you have?
Well, I think I'm pretty stable. If you asked people, they would say, "Sarah's good. She's fine." But I think that for most of my life I've been emotionally numb and have not dealt with things. That's how I dealt with things, and that's how I got through my life. So now it's harder for me to just get through things. It's all coming out now, the way I felt and the way I feel. So I'm a little bit more emotional, and by that I mean I show my emotions more. I get upset or whatever.
Do you think that getting older and moving out on your own has given you the opportunity to reprocess these things that happened to you as a child?
Yes, definitely. You can have a certain view of things, but then when you get out on your own, and you really think about things you kind of understand things a little differently.
If you were granted one wish, what would it be?
In this instance I would say -- I guess this is kind of two [wishes], but, oh well -- that they would find a cure or a vaccine. The possibility of my husband getting infected is very low, but just so that wouldn't even be a possibility. That would be really awesome.
Sarah, is there anything else you would like to share with our readers?
I don't want come off like everything was really negative, but there were a lot of hardships. I just want to encourage people living with HIV to deal with things but to keep aspiring to fulfill their dreams. That's about it.
This transcript has been lightly edited for clarity.
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