To tell...Or not to tell is a burning question for people with HIV infection, especially those who are not part of the gay community.
I've read comments in the news media implying a certain criticism of individuals who make their status a
secret, typically from those who "come out". The mantra seems to be that solidarity and forward momentum require all sufferers
to stand up and be counted.
As someone who has taken the opposite path, and who has always objected to any kind of "outing," I feel this judgment to be both terribly unkind and wrong. It also plays into the hands of those who advocate mandatory reporting of infected individuals to a centralized bureau a terrifying prospect with endless ramifications.
Perhaps my sensitivity comes in part from having been relentlessly pressured by a social worker to join a support group of HIV+ women following my diagnosis in January of 1997. I learned of my status on a Friday afternoon, quite by accident. By the following Monday I was sitting in the
offices of a clinical research group, beginning a battery of tests to determine my eligibility to join it. After a clinician explained the study, I was escorted to the social worker's office.
Young enough to be my daughter, she was LA-casual in her dress and manner. "You'll do better if you join a group," she confidently chirped, and when I asked what "better" meant, she said "live longer."
Taint of Society
Right then, I understood my place in life had radically changed by virtue of a blood test. I was now on one side of a divide, she on another. Being told one has cancer or a muscular degenerative disease is horrific but an HIV infection additionally brings the taint of societal repugnance and condemnation -- even from many who wear red lapel ribbons. I explained to the social worker that I didn't do well in groups, and wasn't sure I'd want my condition generally known. She assured me the group was 100% confidential, but I didn't believe it. Within the showbiz/journalistic community I traverse, there is incessant gossip and speculation about a person's status.
Though she continued to pressure me for the next few months, I resisted and now am glad I did. Fortunately, I've done very well on the "cocktail" (a nomenclature I utterly despise, implying as it does "good times"). It's not difficult not "to tell" -- for now.
I strongly feel this shouldn't be an issue within the HIV community-at-large. Can anyone deny that this disease's stigma is still flamingly alive, affecting relationships, employability and till manner of other life necessities such as medical or life insurance?
For myself, I believe general knowledge of my infection among friends, family and professional associates would disastrously affect my ability to function on both public and private levels. Except for my husband, who had to know because he had to be tested, the only person to whom I've confided my affliction is a friend. She broke out in hives and herpes-like sores over much of her body. Since then she has recovered and been totally supportive, but my disease is now an integral part of our conversation, needlessly. If other friends or family knew about my condition, it would extend the damnable disease's outreach into the entire fabric of my life. I'd be constantly scrutinized for signs of decline and expend a lot of precious energy saying "I feel fine, honest" -- over and over again.
Divulgence would unquestionably cast a shadow on my husband who has
something of a public profile. It could affect his employment and therefore
our medical insurance. If I divulged my own status, I'd be morally obliged
to clear him. Further explanations would inevitably follow: "My spouse
is HIV-negative, and I've been a totally faithful wife for nearly 15 years. I
haven't a clue as to how I was infected. I've never had a blood transfusion or used drugs." I would feel compelled to say all this because it's true.
Whether I'd be totally believed is yet another matter.
These are some -- not all -- components of the vise in which every HIV+ person is trapped. I'm unsure if knowing the source of one's infection makes
it easier to bear, but perhaps this article helps explain my point of view.
I'm not naive. More than a dozen gay men really close to me died of AIDS in the early 1990s, including my gynecologist and the much-loved veterinarian to my four cats. I helped care for some of my desperately-ill friends, and still mourn their loss. My life feels like a piece of Swiss cheese -- holes which will never again be filled. Little did I dream I too would one day be faced with their dilemma.
Yes, my isolation is sometimes agonizing. Fortunately, I have a fantastic doctor and other medical consultants who extend themselves far, far beyond the narrow confines of their jobs. And I've become an inveterate anonymous letter-writer. This article is an extension of that. I do want to contribute, to help. It's possible I may, some day, decide to tell other friends and family members what happened to me on the way to middle-aged glory. I hope that will be in the very near future, when an absolute cure for this monstrous disease is announced around the world, for us all.
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