Living with HIV: Worries, Concerns, Hardships

Living With HIVHIV affects thousands of teens and young adults. Between 2006 and 2009, 29,740 teens and young adults between the ages of 13-24 were diagnosed with HIV. In 2009, the young adults between the ages of 20-24 accounted for the highest rate of new HIV diagnoses. Even though HIV has been around in the United States for approximately 30 years and HIV/AIDS education is included in school based health curricula, there are still misconceptions and stigma associated with the disease.

In the second entry in our “Living with HIV” blog series, teens and young adults address worries, concerns, and hardships surrounding life with HIV. All of the material was written by teens and young adults living with HIV.

-The Young Men’s Health Initiative staff

Top 5 Worries, Concerns, and Hardships:

  • Dating
  • Disclosures
  • Having Children
  • Getting Sick/Medicine
  • Losing Family

“Sometimes I just wish that people could wear a sign on their forehead that says “TRUSTWORTHY” and it could be green for go – yes you can trust me – and red for NO, don’t trust me. If people joke about stupid things and say things like “you’re gay” or joke about HIV or “I’m going to get HIV,” then I know I can’t trust them. For example, this kid made a stupid comment on Facebook like “shout out to people who don’t have cancer” like COME ON we know how you feel, you’re being ignorant! People don’t choose to have cancer, just like they don’t choose to have HIV.”

“I worry that my kids will get HIV. Meds are difficult. Some people have kids and they are negative, but some kids are born positive. It’s scary.”

“I always worry about what medications will make me sick, and how long I will be sick from them. I hate medicine, I hate it! It’s really hard for me to take pills. I asked for liquid that I got when I was a kid, but they wouldn’t let me because the amount they would have to give me multiple times a day would be more than a full cup. Would they rather I throw my meds back up because they make me sick? No one understands me. I have to place the pills far at the back of my throat to swallow them and if they’re not in the perfect position it’s hard. Who likes being sick? Nobody.”

“I have a fear of getting sick, I know it will happen but how long will it last? How sick will I be? When I get sick, it sucks.”

“When I’m sick, sometimes I don’t come to the Dr. because I’m afraid they’ll tell me my T-cells are really low and my viral load is really high and I have AIDS and I’m dying. Like I’m worried about that, but I’m trying to get better, go to the Dr. more. I deal with a lot more stuff than my family thinks. They don’t know it’s upsetting that they think I’m OK.”

“I think it can be fun to stay over in the hospital because it’s the one place everyone knows I have HIV and I won’t get them sick, you know. I get my own room, I can relax, it’s quiet, and they pay attention to me. But at the end of the day, it’s annoying. They’re poking and prodding you and waking you up all night. It’s scary to think about what is going on when they take my blood.”

“Medication is hard. Mixing it with applesauce helps, it reminds me to take my meds because I like the applesauce and I crave it.”

“Medicine is really hard. People just don’t get it unless they have to go through it. Who knows when I’ll be resistant to the pills I’m taking or something.  I’m already resistant to a lot of medication.  If I keep getting resistant, it could be really bad for me.”

“Losing parents and keeping secrets from loved ones.”