To Speak or Not to Speak: HIV Stigma and the Consequences of Silence
Stigma. A mark of disgrace or infamy. A stain or reproach, as on one's reputation.
HIV stigma has been a part of the social context of this epidemic since the first mention of it in the CDC's Morbidity and Mortality Report in 1981. Over the years, it has morphed and mutated into different forms, yet can still exact similar impact and harm to its intended victim.
The casual mention of a friend bearing a suspicious lesion on his skin that could be Kaposi's sarcoma.
The nonchalant whisper of a warning that someone you're trying to date just bought a "Home In Virginia."
The double and triple-gloving of medical staff just to touch a patient living with HIV.
The insistent referral to HIV-positive patients as "HIV-infected" rather than "someone living with HIV."
The exaggerated incarceration sentence that exceeds what one would get for murder for non-disclosure of HIV status in a consensual sexual encounter.
The social media rampage of judgmental speculation when a celebrity dies or someone photographs their "dramatic" weight loss.
The stigma of carrying an HIV diagnosis can infiltrate into many areas of one's life. It can prevent one from getting tested in the first place for fear of confirmation. It may keep one from disclosing their status for fear of rejection by sexual partners, friends, families, or loved ones. It could influence how one navigates employment situations for fear of not getting or losing a job. It can even prevent one from accessing life-saving treatment because it makes the diagnosis all too real.
Indeed, HIV stigma is a curious and insidious thing.
I have recently witnessed two separate social media situations where HIV stigma reared its ugly head. The first surrounded the death of George Michael, the 1980s pop superstar who was equally known for his musical prowess as his brushes with the law for "lewd acts" in public bathrooms. When news of his transition became public, the speculation around if he had died of AIDS emerged, if he "deserved" it or not because he was "gay," "sexually promiscuous," etc., etc. Many took justifiable offense to these sentiments, but especially to the notion of asking about HIV as a possible cause of death simply because he was gay.
The second situation revolved around the Bible-thumping, prejudiced-against-all-things-same-gender-loving preacher Eddie Long. Yes, that Eddie Long. The same one who was accused of the sexual abuse of male minors in 2010 and subsequently settled out of court in 2011. The same Eddie Long who was and will continue to be the subject of media fascination because of dramatic weight loss attributed to an "unspecified medical syndrome" that eventually was cited as the cause of his death in early 2017. Speculation around what initially caused the weight loss was fast and furious. Sherri Shepherd on The Tom Joyner Morning Show reportedly suggested that his weight loss was due to HIV. The reaction to her suggestion was just as swift, with people criticizing her comments as "irresponsible" and promoting stigma that "unjustly demonizes
As a proud member of Generation X, I was torn over Sherri Shepherd's comments when considering how the mention of HIV was the truest definition of stigmatizing when applied to known (George Michael) and presumed (Eddie Long) "gay" public figures during health crises and death. I remember the days when people avoided mentioning HIV when someone gay died, but the reality of it being the actual cause weighed heavy on our minds. Obituaries would say someone died of "pneumonia" or "meningitis" -- yet we all know for what condition those were code words. As the HIV epidemic continued over the years, there was a push to "normalize" conversations around HIV in an effort to make people more comfortable bringing up the subject with loved ones without the threat of stigma. This never happened because the societal stigma perpetuated against folks living with HIV never fully went away.
As a clinician experienced in HIV treatment, I couldn't help but put medical logic to the cases of George Michael and Eddie Long. George Michael had pneumonia and heart failure, both of which can be complications of HIV, and he had been busted twice for public sexual activity. Not inquiring about HIV as a potential contributor could be likened to medical malpractice. Eddie Long was a preacher at a megachurch, accused of sexually molesting several young men and then settling out of court. He publicly promoted an anti-same-gender-loving agenda. If this man came into my office suffering from significant weight loss, HIV (along with cancer, diabetes, auto-immune disorders, etc.) would certainly be part of my differential diagnosis. Clinical offices are certainly not the same venues as social media spaces, but not mentioning the elephant in the room can be dangerous in both settings.
Is it more stigmatizing to verbally bring up the topic of HIV when considering a person's unknown health condition than to stay silent out of political correctness until they die?
The question is layered, but I suspect the answer lies in the intentions of the person who raises the issue of HIV in these contexts. Is their goal to smear the name of the deceased or living with "undisclosed" illness with the certain stigma associated with the mere mention of HIV? Or is the intent to bring HIV into the conversation so perhaps others dealing with similar issues may choose to get tested or seek treatment?
I don't claim to know what's in the heart of Sherri Shepherd when she casually mentions HIV as a possible contributor to Eddie Long's weight loss and subsequent death, or the hundreds of social media trolls who suggest that George Michael died of a big disease with a little name. I don't know if their intentions were to exploit society's fear and judgment surrounding those living with HIV or merely to "keep it real" and say what everyone is already thinking. What I do know is what's in my heart, and I thought about HIV both when hearing of George Michael's passing and seeing Eddie Long's pictures. If I didn't mention it for fear of being accused of stigmatizing gay men and HIV, could I be actually contributing to the culture of secrecy surrounding HIV that drives some of this stigma in the first place?
In 2013 I lost a dear friend and mentee from HIV. He had just turned 30 years old. I had no idea he was struggling with the burden of discovering he was HIV-positive while in the throes of his own education and public health work around sexual health. He told me of his status in 2012 by calling me on the phone and telling me he thought he had Kaposi's sarcoma, and that he had ignored it when he found out for fear that people, including me, would be "disappointed" in him. There's not a day that passes that I don't think about him and wonder if I contributed to this stigma he experienced by not checking in on him more frequently, to see if he was taking care of himself and getting tested.
In 2015 I lost another friend and brother who disclosed to me he was HIV-positive just prior to doctors putting him on a breathing machine for a severe case of Pneumocystis pneumonia. He never got off the ventilator and I watched him transition in a hospice center two weeks later. I subsequently discovered that he had been dealing with a series of ailments prior to the pneumonia that he was desperately trying to cover up. Many members of his family suspected it could have been HIV, but no one brought it up for fear of alienating him. He died under the weight of the internalized stigma of HIV, and how acknowledging his HIV status would change the life he knew. His family, meanwhile, sat idly by and compounded this stigma by avoiding the topic altogether and confirming his suspicion that this was not a topic to be discussed. He died not knowing that they would have been okay with his diagnosis. They would have loved and supported him as only a family can do in those circumstances. His cousin told me she would have accompanied him to his clinic visits if he needed the support.
Stigma can be many things. A mark of disgrace or infamy. A stain or reproach, as on one's reputation. HIV stigma can be society-approved, self-inflicted, or perpetrated by bystanders with ill motivations. It can be a metaphorical cancer that eats away at us slowly. Bringing up the topic of HIV has the potential to exacerbate or alleviate this stigma, depending on the intentions of the communicator and how the other party receives it. Be mindful of how and the spirit in which you bring the topic to light. All I know is that I don't wanna return to the days when silence was the only option.
David J. Malebranche, M.D., M.P.H., is a board certified Internal Medicine physician, researcher, and public health activist, and authored the memoir Standing on His Shoulders. He provides the doctor's comments found in the drug pages of the HIV Drug Guide.