four different couples, mixed races and genders

What People Get Wrong About Living with HIV

It has been 40 years since the start of the HIV/AIDS epidemic.1 Unfortunately, there is still a lot of misinformation and misconceptions about HIV/AIDS - from the transmission of HIV to living with the chronic condition.

So we asked community advocates for What is one thing that people seem to get wrong about living with HIV? Here are their responses!

Misconceptions about living with HIV

HIV community advocate Nicholas"They think it is either no big deal or a complete end to one's life. It is more like an in-between. It's the death of some old ways and behaviors and, after some initial chaos, the birth of a new status quo." - Nicholas


HIV community advocate Kamaria"There’s a lot people that get wrong about living with HIV. For me, as a woman, one of the first mistruths that was co-signed by others around me, judging my “risk behaviors” was that suddenly I shouldn’t experience pleasure, much less deserve it. An HIV diagnosis may take impact on your mental health and that can, in turn, impact your desire or libido for pleasure but it doesn’t always take away the function, the feelings, or the flavor of our human experience. Stigma tries, but there are ways around that depending on what a PLHIV’s needs are. I still have needs, wants, cravings and my body responds accordingly. There are so many ways for me to experience pleasure, have amazing sex, and stay healthy while keeping my partner(s) healthy, that I do not have to deny myself just because society thinks that shame should keep me warm at night." - Kamaria

HIV community advocate Kalvin"So many people think that life as you know it is over. That you are no longer a sexual being or that you will never find love or happiness. None of that is remotely true. I don’t believe for one second that I am damaged goods or that my value as a partner or as a human is lessened in any way. Now with the privilege of hindsight, I see that my diagnosis was only the catalyst that created great change within myself that brought me to this place and helped shape the man that I am incredibly proud to be." - Kalvin

HIV community advocate Dee"The thing they get wrong is that they still think it can can be transmitted by being next to someone, kissing, or drinking from them. They think that we shouldn't be in relationships and think that we shouldn't have children because they may be born with HIV. They think we can still transmit HIV from having sex. They think that you have to look sick being HIV positive and say, "You don't look like you have it." There are still so many myths." - Dee

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Community Poll

Have you ever been unhoused or insecurely housed?