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What It’s Really Like to Live With HIV

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Katie Willingham - Blogs - HIV
By Katie WillinghamSeptember 22, 2021

Have you ever wondered what it's like to live with HIV? If you're not HIV positive and don’t  know anyone who is, then it's a good chance you harbor a misperception or two about this disease -- most people do. I get it -- I held many of the same misunderstandings before my diagnosis 21 years ago.

When my doctor said the word AIDS, I imagined growing thin, getting really sick, and dying. I've seen this movie before; I grew up on Cape Cod in the early 1980s and we knew the word AIDS well. It was a horrific time -- everyone knew that AIDS was a certain death sentence and was terrified of it.

Many people share these memories and believe that nothing has changed since then -- even if they didn't live in that time -- because that's what they've been told about it. But allow me to tell you what life with HIV is really like.

When I was diagnosed in 2000 I didn't think I would see 2001. I was terrified. Everything I knew about HIV/AIDS told me that I would be dead soon, but little did I know then that things had begun to change. The 1990s seemed to be a pretty quiet time around HIV. It had dropped out of the news for a while and most people seemed to forget about it. But it was a very busy time for the research and development of medicines to treat and suppress the virus. A class of medications called antiretrovirals would come along and change everything. Though it would be years before this information would be known to the public, these medications would be responsible for making it impossible to transmit the virus to others. They would not only save lives, but dramatically increase quality of life and life expectancy.

After my diagnosis I started antiretroviral treatment and was undetectable within the year. Undetectable means that there's no longer enough virus to be counted in blood tests -- which means I can't transmit it to others. Now I'm pretty healthy, I take my meds every day, go to all my appointments, and live a largely “normal” life. To tell the truth, if I didn't take a pill every day I would probably forget that I even had HIV. But while life may have largely gone back to normal for me, it hasn't for everyone else.

Stigma and discrimination related to HIV are a very real part of my life. It comes from those who are uneducated about this condition, and it comes in many forms. I've been refused to be seen by a dentist, asked to leave a church, and shunned, judged, and feared by countless people. I don't understand: My health is great and I can't possibly transmit this virus to anyone, yet people still fear me. This is a result of inadequate education about HIV among the general population. You can’t imagine how much a little scientifically accurate and modernized/updated education in schools could benefit the daily lives of people living with HIV.

HIV is a chronic condition that I will live with until a cure is found. But I don't fear dying from this disease, nor do I fear giving it to anyone else. HIV has changed my life and -- believe it or not -- in many ways for the better. I've learned that I'm stronger than I ever thought I could be, and I've seen a glimpse of how precious and short life truly is. I've also become an advocate and try to educate, change minds, and make a difference in people's attitudes toward this disease, and that has been very rewarding.

So in short, if you want to know what life with HIV is really like, it's not the disease that's so hard to live with for me, it's people's attitudes and ignorance toward my condition that make my life more challenging. But no medication or scientific breakthrough is going to make a difference in that, only you can be the difference. One person at a time. If you can see that your ignorance and fear of my condition can actually do harm to those of us who live with it and choose to educate yourself about the modern realities of HIV, you can make a big difference in my life. This is how we change lives and end the epidemic.

And remember: If you are sexually active, please get tested regularly and always be aware of your status. One in seven people living with HIV doesn't even know it!



Photo Credit: Jobalou /DigitalVision Vectors 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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