Ending The Culture Of Shaming In HIV Disclosure To Educate And Affect Change

You are not alone. It will be okay. You will get through this, and you have nothing to be ashamed of.

HIV has come a long way from being a death sentence largely due to effective drug treatment, but it continues to be a stigmatized ailment by many in society, prompting people to be afraid of learning or sharing their diagnosis.

According to the Center for Disease Control, “More than 1.2 million people in the United States are living with HIV infection, and almost 1 in 8 (12.8%) are unaware of their infection.” And although HIV affects everyone, the LGBTQ community continues to be among the highest infected. “Gay, bisexual, and other men who have sex with men (MSM) of all races and ethnicities remain the population most profoundly affected by HIV,” according to the CDC.

Hyde Taidghin O'Brien and husband Rey Dalitto know of the struggles, resources, and hope of living with HIV.

Native Philadelphian O’Brien, age 30, first found out that he was HIV positive when he was 23 years old. He recalls being told over the phone while he was at work about his status, an experience that he says added to his trauma.  When first diagnosed, he had a friend in the pharmaceutical industry who gave him resources that are not always readily available to others who first are diagnosed with HIV.

“I was very lucky to have that and it is knowledge I have passed on to other people,” O'Brien said.

One of the parts of knowledge his friend gave him was the knowledge to ask for genomic tests in order to get the best personalized HIV treatment.

Dalitto, a native of Southern Texas but who spent many years in Chicago as an artist, learned of his status over twenty years ago. He attributes his wide support group as a needed support during first learning his diagnosis. He is a testament of how people can live healthy lives with appropriate treatment.

“It’s not the end of your life, but you have to be tested,” Dalitto said.

Dalitto and O’Brien live in Champaign, IL but continue to travel to Chicago to Howard Brown for a lot of their treatment due to the wider availability of specialized care.  They also notice a difference in culture between bigger cities and smaller towns. In Chicago, they felt more acceptance of their HIV status in the community where they weren’t shamed for openly disclosing as they sometimes feel now. O’Brien, a former art student in Chicago also expresses concern that some schools' health insurance do not cover HIV medication—a struggle he experienced as a student.

In addition to being a support system for each other O’Brien and Dalitto express a desire to educate young adults about HIV. They want to teach others what to expect when starting their treatment process. Dalitto expressed some of the side effects of some HIV medication like acne, hair thinning and cold sores—side effects that happen when the body begins fighting infections it could not have otherwise without the new medication.

Dalitto wants newly diagnosed people who are starting medication to know that, “Honey, this is okay. I know it is scary, but this means you are getting better.”

O’Brien and Dalitto say some medication can give scary lucid dreams and other uncomfortable and sometimes unexpected temporary or long term effects of prescribed HIV medication.

 “Side effects are so varied, and if you don’t know all of the side effects, it can be very scary and lonely,” O’Brien added.

High instances of drug use in the queer community and race are also some of the factors O’Brien and Dalitto acknowledge as playing a role into HIV infection. 

According to the CDC, “Blacks/African Americans continue to experience the most severe burden of HIV, compared with other races and ethnicities. Blacks represent approximately 12% of the U.S. population, but accounted for an estimated 44% of new HIV infections in 2010. They also accounted for 41% of people living with HIV infection in 2011.”

Dalitto and O’Brien recount a story of a friend struggling with not only coming out to his African-American family but also having to tell his family that he is HIV positive. They noted the stigma of being black and gay and further being black, gay and HIV positive.

Because both have struggled with addiction and Dalitto has bipolar, they think support and treatment of HIV, especially in the LGBTQ community, should be infused with mental health, nonjudgmental drug addiction treatment, and support groups.

“We wouldn’t have been able to get clean if we didn’t have each other,” O’Brien said while explaining the importance of having a good support system.   

Education is an important sentiment they would like to convey. O'Brien and Dalitto added that straight people with a negative HIV status are an important component to HIV education as well, especially in debunking some of the myths associated with HIV. 

“The people I have educated the most are straight people,” O’Brien said.

Amy Myers, a member of the LGBTQ community and advocate in Champaign, IL also shares the sentiments of education as a key component. She does not have HIV, but has watched some of her friends die from AIDS and has been an advocate to those who are HIV positive.

“People need to be aware. HIV is very serious,” Myers said. She emcees a drag show at Chester Street Bar in Champaign, IL where attendees are encouraged to get tested for HIV outside of the bar venue during the shows in partnership with Champaign-Urbana, IL Public Health. In addition to education about HIV status, she hopes that promoting preventative measures can also reduce the contraction of HIV.

“I believe every sexually active gay male should be on PrEP,” she said.  

Myers, O’Brien and Dalitto all acknowledge the importance in being able to have an open conversation about HIV and AIDS so that there can be more resources, support, and awareness.  

Dalitto wants people who have HIV to know that, “You are not alone. It will be okay. You will get through this, and you have nothing to be ashamed of.” He also added that there needs to be an end to the culture of non-disclosure to effectively affect change.