Twenty-three percent of people living with HIV are women.

They are a minority when it comes to populations impacted by HIV, and experience of living with HIV as a woman can be isolating.

“I never worried about HIV because I was heterosexual, female, had a white-collar job, I never used IV drugs,” said Kathy. “There was no reason in my mind to ever be concerned about it, but here I am.”

March 10 is National Women and Girls HIV Awareness Day, and to help us to spread the word about the importance of testing, prevention, and treatment, Kathy a member of our Prevention Advisory Board, volunteered to share her story.

Kathy has been living with HIV for more than 10 years after she was infected by her long-term partner who kept his status a secret.

“I wish my partner hadn’t felt that he had to hide it,” she said. “We should be able to feel open and have those conversations.”

Kathy recently relocated back to Des Moines, after spending a few years traveling. Upon returning to the city, and coming back to The Project, she decided to join the Prevention Advisory Board.

“I’ve always wanted to have a voice, and be an activist for the cause, but I got caught up in my own stigma and barriers,” said Kathy.

Finding a support system

At The Project, Kathy found not only a support system for her, but also for her partner.

“They really supported him in being a partner to me which was an added benefit we weren’t expecting,” she said. “He came as my support person when I signed up for services, and they took him in as well and educated him, and gave him his options on PrEP and talked about U=U (Undetectable equals Untransmittable).”

Navigating relationships while living with HIV can be challenging, and at The Project, the medical and case management team were there to help her every step of the way.

“In my travels, I encountered Ryan White Programs in Virginia and California, and this one here in Central Iowa is the best one that I have experienced,” she said.

Managing her HIV diagnosis
Being diagnosed with HIV used to be a death sentence, but today HIV is a manageable chronic condition.

“As far as where the science has gone with this virus, I don’t think there should be any fear left anymore,” said Kathy. “With the treatments and everything that is out there today, we’re no different than any other person.”

“I live with a prescription drug regimen that in my opinion is easier to deal with than diabetes or cancer or many other things that people are a lot more open to talk about and admit,” she said.

The effects of the scare campaigns used in the early days of the HIV epidemic still linger and create stigma and misconceptions about what it means to live with HIV.

“It’s surprising how often people’s immediate reaction is associating with being HIV positive with having AIDS and dying,” she said. “Every conversation I have, I have to educate who I am talking to, and say no, no, no it’s come so far.”

“I’d like to see it more mainstreamed into STD testing and education. Why do we call HIV out separate? In the beginning, it made sense. You could get HIV and likely die, but it’s not like that anymore.”

Not only do patients face the stigmas that they experience from others, but they also struggle with the shame they feel about being HIV positive.

“I think I self-inflict my own stigmas more than they are imposed upon me,” said Kathy. “Whatever I can do helping us destigmatize ourselves as well doing what I can do to educate the public I want to do.”

Kathy’s message for women
“It’s important to know that you never know,” she said. “It’s a simple test, and if you have any doubts about your partner make sure you know your status and theirs.”

The STI tests that your primary care provider does at an annual well-woman exam do not include HIV unless a woman specifically asks for that test to be done. If you want to get tested you can always schedule a free and confidential rapid HIV test at The Project.

Additional resources:

Contact us at (515) 248-1595 to learn about establishing care, make an appointment to get tested, or learn more about PrEP.

Anneke the Behavioral Health Consultant at The Project hosts a monthly Wellness for Women support group for women living with HIV. The next meeting is happening on March 16, at the East Side Clinic Wellness Center.

Get involved by joining our Prevention Advisory Board. Contact Noah Beacom at [email protected] for more information.

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