Anyone can get HIV. Don’t’ believe me? Ask this smart, Jewish, 27 year old girl who has it…
Sarah got diagnosed with HIV when she was 24 years old though she believed she contracted the disease when she was only 19. I had the opportunity to interview her and get some insight into what it would be like to live with HIV. As a 24 year old, I was blown away by how easily I could relate to her story. I think it will resonate with you, too.
Did you know about HIV and did you get tested?
I had never been tested before and to be honest, it wasn’t even in the realm of possibility in my mind that I could get HIV. I grew up in Ohio where there wasn’t that much education about HIV/AIDS but I came from a smart family and a wealthy town. I was a nice Jewish girl who had all the opportunities in the world. I went to the gynecologist every year and got an annual pap smear and STD tests. I never got a blood test for HIV because there was no thought in my mind that I could have HIV. Blood tests are intrusive and uncomfortable and I saw no point to doing it.
When did you know something could be wrong?
I turned 24 years old and I was working at a hospital in Cleveland when one day I got painful bumps on my head. I went to the dermatologist and he told me that I had shingles. He said that it is common in hospitals to pick up infections more easily but that he wanted to do some tests to find out why I got it. One of the tests was a blood test for HIV. He reassured me that he has never found HIV in anyone and they do the test just to be safe.
How did you find out?
I left the office and one week later I got a call from him asking if I would come back into the office. My stomach dropped and I knew right then that I must have tested positive for HIV. I went back and sure enough, my test came back positive. I was shocked and went to see my doctors and they were stunned as well. They said that there must have been some sort of mistake and that I should go back and get another test. So I went back and got two more HIV tests. Both tests came back positive.
What was your initial reaction?
I was confused and upset. I didn’t understand. I had always been safe. I’ve had very few partners. Why me? My whole family met at the doctor’s office and I began asking questions like, “How long do I have to live?” and “What does this mean?” My family didn’t know much about the disease either so this was all new for us. We were all trying to learn as quickly as we could.
Any ideas on what event led to contracting HIV?
Well, I immediately started wondering, “How did this happen?” I have been type 1 diabetic since 1988, age two, and have had an insulin pump starting at age sixteen. I thought the HIV came from a diabetes related event since I go to the doctor, get my blood drawn, and get IV’s more than most people. I was convinced I contracted HIV from a hospital.
Right when I found out I had gotten HIV, I was simultaneously getting my master’s degree in Public Health (talk about being ironic). I got my diagnosis over winter break and only missed two weeks of school but upon my return, I decided not to tell anyone of my diagnosis. I didn’t want to bring attention to myself. I just wanted it to go away. I suppressed it as much as I could. During my master’s program, a little later on, I had to take a class on infectious disease. I didn’t want to take the class but it was a requirement. I figured I could suck it up and get through it because it was only a 6 week class in the summer. While in class, our professor told us that there is really no chance that people can get HIV from hospital needles in today’s age. I then realized that I must have gotten it from a sexual partner, even though I didn’t want to believe that it was possible.
When I was 19 years old, I had a boyfriend, Ricky, who was from Guatemala. We dated for one year and I lost my virginity to him. When we first had sex, we used condoms but then I began taking birth control so we talked about nixing the condoms. Before having unprotected sex, I decided to do the smart thing and get us both tested. We went to Planned Parenthood and they did all the tests for STD’s and then asked us if we wanted to do an HIV blood test. My boyfriend was afraid of needles and decided not to do it. I didn’t really think much of it since getting HIV was the last thing I assumed would happen and I couldn’t picture the person I love contracting it. What I didn’t know was that even to this day, HIV is more common in migrant populations around the world, not just from other countries to the US. HIV is also more common in uncircumcised men.
Looking back on it, it really makes me mad that Planned Parenthood makes you sign a consent form before getting a blood test. Some states do not require a consent form but some states do. In states that do not require consent; a clinician can always test you for HIV. It’s not fair because it’s not my job to know what my risk factors are. That’s why I went to Planned Parenthood. I find it really upsetting that you can’t just give someone an HIV test. My situation could have totally been prevented. I don’t blame anyone but I do in some ways blame Planned Parenthood for not giving us the test.
You know, HIV started out as a gay men’s disease back in the 80’s and people turned their heads and didn’t want to deal with it. If it was started by men giving it to women or women giving it to men, I guarantee that it would have been a completely different story and NIH would have been on it right away.
Did you reach out to Ricky?
I don’t have contact with him anymore and I didn’t talk to him after I got diagnosed. Even though I didn’t communicate with him, the state contacted my old partners and told them to get tested. The system is very confidential so even if Ricky said that he knew he had HIV, the state couldn’t communicates that information back to me. I will never know for sure but I am satisfied believing that it is him.
Do you take medication?
Yes. My doctor reassured me that HIV is no longer a death sentence, like it was back in the 80’s, and that it is treatable today. I started on medication right when I got my diagnosis although there is some debate as to whether one should start taking medication immediately. I found out that different "strains" of HIV develop once the virus mutates and causes resistance to certain medications. The resistance occurs because someone did not comply with their medication and did not take it every day, as necessary. At that point, the virus builds up immunity to the meds since it was not taken regularly. If that strain is passed (based on someone not taking their meds) then you have that resistance. Everyone these days has some strain of the virus and is resistant to some medications, but historically that is how the strains develop. I was luckily only resistant to one medication- the “all in one” pill. I now take 3 pills a day. I am very fortunate because I feel no side effects. I just take the pills with my fish oil and vitamins. I am lucky because I have a very high t-cell count and a high immune system so I feel good every day.
How is it for you emotionally?
It is really hard emotionally. Taking a pill isn’t a big deal but dealing with it internally is very challenging. I don’t really talk about it at all. There aren’t really support groups out there for people like me. That was really frustrating. It is also harder to find support groups for people like me because most of us have private care. We can afford our own infectious disease doctors, our own psychiatrists, etc. In other populations, they might need to go to a clinic, govt. organization or a center to get their meds. That creates more of a community and sense of support all around. People like me have individual/specialized care since we can afford it. Also, since it was rare for a young Jewish girl to contract the disease, there aren’t really people talking about it. I am sure there are other girls out there like me, but they are all quiet. I eventually found a crisis center that was the closest thing I’ve had to a support group.
Who have you told?
My friends don’t really know what happened to me. They think I have my life way more together than theirs is. I finally told my first friend a couple months ago when I thought she was ready to hear the news. She was really supportive and I was so grateful for that. My friend was educated about the disease before I told her which helped when I explained it. The reason why it’s so hard to tell people is because I was at first ashamed and thought they wouldn’t accept me. I thought that they would think about it every time they saw me or that they would share it with other people. I am happy my family knows because they are really supportive of me.
What is your outlook on your diagnosis now?
I think having HIV has made me a better person, as crazy as it sounds. I have a better global perspective, I’m less judgmental, and I don’t feel immune to the world even though I had advantages growing up that other people never had. Overall, I have a positive outlook for the disease. At first I thought, “Other people deserve this, not me. Drug addicts deserve it. I don’t. I know better. I am better than this.” But having the disease has taught me to not judge anyone else because no one is better than anyone else. It’s not for me to judge. It can happen to anybody.
What is dating like these days?
Dating is hard for me. Did you know that it is a felony to have unprotected sex if you know that you have HIV? You can go to jail. If you know you have HIV and always use protection, it is your choice whether you tell someone or not.
I had a boyfriend for 2 years before I got diagnosed and I told him about my HIV and he got tested and surprisingly was HIV free. In general, it is harder for a female to give a male so it makes sense that he didn’t necessarily contract it. It’s way easier for a guy to give a girl HIV because he goes inside of her.
Have you had sex since?
Yes, I have had sex since. I needed to know that I could make sex a good experience because I was afraid that I might freak out since the disease is tied to a sexual experience for me. Since I used protection and it was technically undetectable with my medication, I chose to not tell my casual partners that I had HIV. I made sure that I was not putting anyone at risk (including myself) when I engaged in casual sex after my diagnosis (by using a condom). I knew it wasn’t going to be a serious relationship so we wouldn’t have to have the talk about my diagnosis. If I did really want a relationship with someone, then that would be a different story. I would have to find a way to tell them.
Would you ever talk in public about what happened to you?
I am now coming around to the idea of it. I would honestly be more inclined to talk to strangers than anyone in my world. It’s easier to talk to people you don’t know.
What is your biggest challenge now?
I think my biggest hurdle is figuring out how to tell someone if I want to date them. The timing would never seem right! Relationship stuff is hard. I am used to dating on a regular basis but since I got diagnosed, I completely closed that door. I think I am just now starting to be open to it again. The advice from my parents for when I tell a partner: "if you're not okay with it, how do you expect anyone else to be?" and "this will help you find the best person out there because they will be able to look past this and already have feelings invested in you as a person. This won't change anything. You would want someone like that regardless" If someone doesn’t want to have sex, I totally get it but there is a little part of me that thinks that they are a little less mature, a little less open, and a little less aware.
What stereotypes do you encounter?
For the people who have sex and do not contract HIV, their one mistake will turn into a funny joke later down the road instead of something that they live with their whole live. I feel like I’m also seen as dirty because I’m one of the people who have HIV but the other people who didn’t get it can brush it off, like oh you’re just a stupid kid who made one mistake and had a one night stand. I have a really hard time with that. It’s hard for me to accept that this did happen to me because it’s so easy to put the blame on other people or say it should have happened to someone who was reckless. In general, the stereotypes that I deal with are ones that I think people will associate with me. I assume I will always be linked back to the one mistake I made in college. This is not necessarily true. Time and people are changing. Hopefully I am wrong and people will not think this. These are my own internal challenges that I battle with. Not necessarily a reflection of how society will characterize me.
1. Don’t assume that someone is not infected because they "come from a good family" and are in the same social circle as you. People wouldn't think I was infected and they would obviously be wrong.
2. HIV affects people from all different walks of life and it is short-sighted to believe that only "certain types of people" contract the virus. Therefore, you should ALWAYS be safe and wear a condom or go with your partner and get tested. Don't assume they have been tested just because they told you so. The odds of contracting HIV are very small. Especially for people like me. But even if the percentage is 1%, you don't want to be in that 1%. And SOMEONE has to make up that 1%, so make sure that you are not the one.