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A Remembrance of the Anguish and Anxiety of Human Immunodeficiency Virus (HIV) in an Emerging Outbreak of Monkeypox December 1985

  • Paul Rousseau
    Correspondence
    Address correspondence to: Paul Rousseau, MD, 1531 Wakendaw Road, Mount Pleasant, SC 29464.
    Affiliations
    Department of Medical Education Quillen College of Medicine East Tennessee State University, Johnson City, Tennessee
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      “AIDS itself is subject to incredible stigma.”Bill Gates
      Monkeypox is an emerging virus in the United States that has disproportionately affected gay and bisexual men participating in sexual encounters. The virus is reminiscent of the early days of the AIDS epidemic when there were ethnocentric and prejudicial inferences against the gay community; however, unlike AIDS, there is a monkeypox vaccine and the infection is usually self-limited. Nevertheless, when coupled with a growing anti-LGBTQ+ sentiment, monkeypox has fomented a stigmatization that is resonant of the early days of the AIDS epidemic. Consequently, I recalled my involvement in treating two homosexual men in 1985. Society was notably intolerant of same-sex relationships at the time, and the onset of AIDS only served to exacerbate the animosity.
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      Thomas is thin and bleak with a sickly sheen. He lies motionless, his breathing shallow and rattled, his lungs drenched with Pneumocystis carinii. He had eschewed treatment, fearful of societal scorn and condemnation, until, near death, his partner Robert dialed 911. Now he is in the hospital, comatose and dying.
      Robert sits bedside, his face wearied and worn. He taps his toes over and over. “Two months ago we were at dinner, celebrating Thomas's thirty-second birthday, and now…” A ragged sob rolls up from his belly. “And now he's here, a beautiful young man, slipping away.” My head slumps. The line between joy and grief is thin and porous, and Robert is grieving horribly. I step to his side and cradle his shoulders. He pivots toward me. “Doctor, it has been ten days, how is he still living? He's just bones and wisps of tissue.” “He's doing this on his time, not ours,” I reply, “but I think it will be soon.”
      Robert glances out the window, his eyes pensive. “You know, I've not been tested. I don't want to know. Besides, there's no treatment, so why get tested?” I query if sex with Thomas was unprotected. “Yes, of course.” I advise him it is likely he is infected, and testing would enable him to plan for the future as well as protect others should he develop another relationship. “I'll think about it,” he says, “but it would just be another thing I'd have to hide.” Regrettably, society's bigoted and oftentimes hostile conduct toward the gay community makes Robert reluctant to get tested. I cannot imagine the anxiety and fear he carries.
      “Doctor, are you required to put HIV on the death certificate?” I tell him I am. “Can't you just write he died of pneumonia? He's estranged from his family, but when I notify them of his death, he doesn't want them to know it was HIV. And I don't want them or anyone else to know either.” His fear of the indignity of familial and public contempt aches my heart. I tell him pneumonia will be listed as the cause of death, however, I am legally required to include HIV as the underlying causative factor. I inquire if Thomas's family is aware of their relationship. “They are,” he responds, “but they don't approve of it.” I suspect, perhaps wrongly, they will intuit Thomas died of HIV. To help allay Robert's apprehension, I suggest he inform them Thomas died of pneumonia and forgo further discussion unless they ask.
      A moan passes Thomas's lips, then a deep breath, then silence. Robert gasps and grabs Thomas's arm. “Thomas? Thomas?” I move to the bedside and press my stethoscope against Thomas's chest. His heart and lungs are silent. I turn toward Robert. “I'm so sorry Robert, he's passed.” Robert collapses to the floor and weeps. “He didn't want a funeral. He was fearful that I would be publicly shamed for my relationship with a gay man dying of HIV. He always worried about me, not himself.” He pauses, sobbing. “Hard as it will be, I will honor his wish, I will grieve alone.” Robert is right to honor Thomas's request, however, grieving alone without a funeral or a ritual of mourning places Robert at risk for prolonged and complicated grief. I suggest he consider a grief support group when he is ready. “I might, but I'm so blatantly gay, people will know why I'm there.” Tears wet my eyes. I crouch and hug Robert and offer the only solace I have: my presence.
      One year after Thomas's death, I receive a letter from Robert. It contains three sentences. “Thank you for the care you provided to me and Thomas, I will never forget it. And now, as expected, I too am dying, of HIV. I don't know what to say; maybe one day society will understand and forgive us. Love, Robert.” I return the letter to the envelope for safekeeping and hold my head in my hands. I, like Robert, hope that society will one day understand the anguish and untold toll of HIV and AIDS—the fear, vilification, and implicit bias—but he is wrong to ask for forgiveness, for there is nothing to forgive.
      Author's Note: In memory of Thomas and Robert and those who have perished from AIDS, and to the valiant clinicians and researchers who labored to discover the human immunodeficiency virus and contributed to the development of anti-HIV medications, and to the activists who persisted amongst the fierce apathy of the general public and governmental policymakers. Because of them, HIV/AIDS is now a chronic illness, not a death sentence.
      This case happened decades ago and the two people mentioned are now deceased, however, names, location, and certain details have purposely been altered/changed/omitted to protect identities of the patients, any of their surviving family members, and the health care clinicians involved in the care of the patients.

      Disclosures and Acknowledgments

      This research received no specific funding/grant from any funding agency in the public, commercial, or not-for-profit sectors. The authors declare no conflicts of interest.