One Woman Shares Her Journey of Living with HIV for Over Three Decades

Merriam Webster defines the word survive as “to remain alive or in existence: live on, to continue to function or prosper.” That’s exactly what comes to mind when I think of long-term survivors of HIV. I think of people living through a time when there was no end in sight.

Functioning in a time when it was often hard to get by day-by-day. Prospering in a time when our government would barely acknowledge that the epidemic existed. Despite all the hardships they have survived, they are still here, and many are helping to ensure others survive along the way. In honoring long-term survivors and National Women and Girls HIV Awareness Day on March 10, I had the opportunity to speak with Ms. Kathy Bennett. She is a 63-year-old Black woman who has been living with HIV for over 31 years. She recently led the longest running HIV support group in Maryland.

Bennett was diagnosed in 1990, which was a time of great uncertainty. Her journey is unfortunately a very familiar one. She recalls in 1995, “We were just helping each other, because they didn’t have the medicine. As for myself, I was very ill, and my doctor was treating me and my best friend. And my best friend didn’t make it, and I knew I was right behind her.”

Bennett was also living with Hepatitis C and her liver had started failing. Her doctor told her she was too ill for him to treat her. His only advice was for her to prepare a living will. And with that, she laid in bed for four months waiting to die.

Not long after that, her doctor came to her again and told her about new drugs that were available. At the time he didn’t know what they were going to do, but she also had nothing to lose. Bennett started taking the medication and was undetectable within four months. For her, it felt like a miracle, and she just thanks God that the right medicine came along at the right time. Bennett knows firsthand about the progress that has been made in HIV treatment and considers it “a dream come true,” as over time she has gone from taking 18 pills a day to now taking one pill, once a day.

Before reaching undetectable, Bennett, like so many, was struggling to get by. She was dealing with addiction and incarceration. She was witnessing loved ones succumb to the same condition she was trying to manage. As a means of coping, she started attending a support group at the Institute of Human Virology at the University of Maryland School of Medicine. It was run by Dr. Joe Jacques, a psychologist who was also living with HIV.

During the time Bennett became sick, she also became suicidal. She said she would have rather ended it herself than let the virus do it. When Jacques heard this, he introduced her to a HIV specialist and promised he’d take good care of her. The specialist was the same doctor who would later introduce her to antiretroviral treatment. Years later, Bennett was healthy and began working at the Institute herself. By now, Jacques had passed away and Bennett felt this was the opportunity to take up the torch. She went on to work under the Jacques Initiative and lead its HIV support group in Baltimore for 18 years.

After being a true testament to giving back and providing for others, Bennett was able to retire in November of last year. She says, “I feel as though the program had God’s hands on it, because he knew people were dying... and they had a safe place to come to.”

Bennett believes strongly in creating that safe space and getting to the heart of people. She says that regardless of how far we have come with medicine, many people are still broken. Whether it be substance use, mental illness, homelessness, or poverty, we must get to the spirit of the people, connect with them, and address their needs.

At this point in her life, HIV is not difficult for Bennett to deal with, yet she herself has still faced recent challenges. Last year she was engaged to be married and didn’t know her fiancé was using drugs. He died of an overdose and two days after he was buried, Bennett tested positive for COVID. A month later she had an aneurysm and a stent was placed in her brain. She went from once again not wanting to live to continuing to fight through it all. Her resiliency never stops.

Bennett wraps up our conversation by saying, “I would like people to know that even with all that I’ve been through in my life, I am a survivor. I survived all the obstacles that were in my way. From incarceration to being homeless to substance abuse to staying in bed [for] months, being told to get your life in order.... I overcame all of that, and then just recently what I went through was worse than being diagnosed [with HIV]. And guess what...still I rise! And I tell people whatever you do, it ain’t over until it’s over.”

Bennett is living proof that long-term survivors are vital to the HIV movement. There is wisdom in their experience. There is growth in their journey. There is beauty in their survival. These are our elders in the fight against HIV. Speak their names. Tell their stories. Give them their flowers while they are still here. To all the long-term survivors of HIV, I am humbled and grateful. I am humbled by what you have lived through and grateful you have made it this far. Thank you for starting this fight. I look forward to the day when we can finish it. Until then, keep surviving, keep thriving.