In-your-face realness

If you’ve faced HIV-related stigma how did you confront it?

That’s the question we asked our followers on Facebook, Instagram, and Twitter. They served up some honest feelings and experiences

“Since becoming positive in 1985, I have always been honest about my status. Every time someone tried shaming me, I would educate them as much as possible. Education stops stigma.”— Marcelo F. Levy

“By holding my head up high as well as educating not only myself but everyone about HIV.”—@nai4ever

“Soon after receiving my diagnosis I would lower my head in shame, lock myself in a room, and cry. Today, four years later, I know my HIV does not define me and the opinions of uninformed individuals do not change who I am inside. Depending on the situation, I advise them to Google some facts or I provide them with information. We are all in need of a little education, especially in dealing with myths about HIV.”—Marissa Gonzalez

“As a nurse working with people living with HIV, I am desperate to find ways to help patients overcome as much of the stigma as possible. It’s killing people and it’s the saddest thing ever, in my opinion.

“A large portion of my work continues to be working with folks who are struggling with adherence to the meds and with staying engaged in their care. With this group of patients, the stigma and internalized shame is often palpable. Having to take medicine daily becomes a constant reminder of the trauma of their diagnosis. Instead of being able to see the medication as offering them better health and life, they struggle with seeing the value of their life. I have watched many people die agonizing deaths because of this, and I struggle with trying to help them accept and understand that they did not do anything wrong—that truthfully it was bad luck and they are as deserving of love and life as anyone else. Despite life’s tragedies and hardships, by taking their medication they can at least have more energy and feel better; they deserve that at the very least.”—Jonah Pierce

“I didn’t allow stigma in. Around 1983, a friend took her own life following an AIDS diagnosis. After my own diagnosis in 2014, I stepped out of the shower and saw I was skin and bones, fragile and frail. Deathly looking, my ass cheeks literally hanging off me. I looked at myself in the mirror dead in my eyes and I said, “I have AIDS!” I immediately thought of my friend and promised myself shame would not bring me down or take my life. From that day forward I have spoken publicly and informatively about my HIV status, allowing me to live a stigma-free life. I share that courage as well as giving others a public platform to live stigma-free.”—Zee Strong

“I confronted them without coddling their feelings. When people would say ignorant things or ask inappropriate questions, I would simply inform them that it is inappropriate and that my disclosure is not an invitation to hurt me or be intrusive.”—Jonathan Matthew Madison

“After years of hiding and wondering if people knew my status, I took back my power and my voice and disclose publicly now. Stigma still exists, and it can come from people you would least expect. I had recently been told by a family member that I am waving my ‘flag of indiscretions like a war hero.’ Oh, buddy... you got that right. Yes, I am!”—Erin Shafer Fulton

“As an individual who has felt HIV-related stigma, education plays an essential role in reducing stigma and discrimination. I offer support and speak out to correct stigmatizing myths and stereotypes about HIV. Education starts with the self. Realize that different people face HIV-related impacts differently. Becoming an advocate is walking with confidence.”—Anthony Adero

“I’m a long-term survivor of AIDS, since 1994. I remember when my friends would be here one week and dead the next. Stigma was very hard to deal with back in the day when HIV/AIDS was a death sentence. It was a scary time when you really didn’t want anyone to know your status due to discrimination and the stigma of being labeled as ‘the GRID [Gay-Related Immune Deficiency] guy.’ Many people were losing their homes, apartments, and jobs. It was a scary time. When better treatment and care became more available, stigma was handled completely differently by educating the masses with current information on condom usage, sex, and taking care of oneself with this growing epidemic at hand! For me, it made me gain a tough exterior on the outside and a compassionate heart on the inside. Over the years I learned how to educate my family members and loved ones about the importance of safer sex and treatment.”—Jack R Miller

“I was wearing an HIV Long-Term Survivor T-shirt as we were coming back from AIDS Watch. We stopped for gas in a town that was half the size of Mayberry, RFD. I wasn't even thinking about the shirt when I went inside the gas station to get some coffee. This rough-looking guy, the stereotype of a backwoods Bubba, starts walking towards me. It was then that I realized that my choice of shirt might not have been a good idea. Bubba stopped in front of me, asked me how long I had been HIV-positive. I told him 34 years. He proceeded to tell me about his Pa, who had died of AIDS. Without stopping to see who might have been looking, he gave me a big bear hug. I am not a hugger, but that hug made my day/week/month and year. He turned back to me and said, ‘Whatever you're doing, keep it up!’ "—Mark L Grantham

“I hid my status as self-stigma within took over. My story includes addiction to street drugs; for years I didn’t always adhere to my HIV medications, and I developed resistance to a few classes of drugs. Living in the South, I saw stigma within my own communities. After waking up from a medically-induced coma following acute double pneumonia, my only options were to go into a nursing home or to stay with family. I chose my family. After rehab, I didn't understand why I was still alive and why I did not die. I had wanted to die. As time went by, I started attending a few support groups and realized I had to share my story and take back control. That's when I opened up about my status and drug usage. I no longer had to lie about the real me or hide my past. I started to live again, this time with no shame. In the last six years, I've been trained in prevention, HIV testing and outreach, and in STI and hepatitis C education. I am now on the South Carolina HIV Planning Council as a voting member and am chair of the DHEC HPC Positive Advocacy Committee. Through this advocacy work, I bring information back to my community. By being open, I hope others will see they don’t have to follow the same path I did. It's getting better in the South, but we still have a go way to go.”—Kelly Johnson

“Since becoming positive in 1985, I have always been honest about my status. Every time someone tried shaming me, I would educate them as much as possible. Education stops stigma.”—Simon John Coyle