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HIV: What I Wish People Knew

Katie Willingham - Blogs - HIV
By Katie WillinghamMay 20, 2021

When it comes to your health, ignorance can be extremely detrimental. Of course, our own ignorance can have consequences. But I'm also referring to the deep impact the ignorance of others can have on your life -- or death. This is a reality for people living with HIV, and as a woman living with HIV, this is what I wish people knew.

HIV is one of the most stigmatized health conditions in the world due to its horrific and deadly introduction in the 1980s. It was unknown and mysterious, thought to be extremely contagious, considered 100% lethal, and extremely frightening. But it is now none of those things -- so it doesn't have to be feared.

HIV isn’t a death sentence; it's an easily manageable chronic condition that people live long, productive, and dignified lives with. We now know and understand HIV, so it's no longer mysterious. If you follow your treatment so that your viral load is at an undetectable level, then you cannot transmit HIV to anyone.

Modern science and continuous advancements in medications have led to extremely effective treatments that can suppress the virus to undetectable levels (meaning there isn’t enough virus to be counted in blood tests). Being undetectable also means you can even have children safely. So people living with HIV are able to live largely “normal” lives -- long, healthy, dignified lives.

Yet despite these advances and others, people living with HIV are stigmatized, discriminated against, isolated, feared, and even criminalized. I wish people understood how their biases toward my health condition affect so much of my health care and my life.

People living with HIV often struggle to find housing, employment, other resources, and even meaningful relationships due to fear of their condition. Many are disowned, avoided, or feared by family, friends and community. The fear of such stigma dissuades people from wanting to know their HIV status, and when people don't want to get tested to know their status, this pandemic continues to spread quietly in our society. This is just one way in which stigma affects us all.

HIV is a human condition that doesn't discriminate. It can happen to any of us because one of its primary modes of transmission is through human nature -- we want, need, and enjoy sex. Sex is almost as stigmatized as HIV in some places, but sex is a human response to very human feelings that are natural to being human -- do you see where I'm going with this?

Regardless of how you feel about how someone contracted HIV, I wish people would accept that people who live with HIV are people too. We're human beings, with human feelings and human needs. We're often judged for how we contracted HIV, but our sex lives and lived experience should be our concern alone and not something to be judged. People living with HIV deserve the same respect and privacy as anyone else. My health condition doesn’t give you rights to fully access my personal life, and no one's personal decisions, beliefs or lack of, “lifestyle,” or human inclinations should affect their health care.

Living with HIV isn't always easy, though with modern advances the medical side has largely become a nonissue for many of us. Now the greatest threat to people living with HIV is stigma. Your fear of my virus or judgment of my character creates far more risk and harm to me than the virus itself. Incidentally, much of that risk and harm applies to you and your loved ones as well, as implications of stigma fall on us all as a society. That's what I wish you knew.


Photo Credit: Kateryna Kovarzh/iStock via Getty Images

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About the Author
Katie Willingham

Katie Adsila Willingham is a woman of transgender experience from rural northwest Alabama. She has been living and thriving with HIV since 2000 and became an advocate in 2017. Willingham is a Community Advisory Board member and blogger for The Well Project’s A Girl Like Me, raises awareness of HIV issues with the Alabama Poz Life Facebook group, and is Alabama state lead for Positive Women's Network USA.

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