One of the luxuries of the full-time career I left behind some years ago was dental coverage. Luckily, until recently anyway, I’d never even had a cavity, but lately my lucky streak has ended. So, I found myself in a dental clinic downtown in my small hometown city to which I’d relocated after giving up said full-time career. The very kind dentist informed me that I would need a letter from my doctor clearing me for the work since I am, in fact, HIV-positive. He assured me, with some embarrassment, that it was for my own protection, not theirs. Something about my white blood cell count. My readily raised hackles probably had him a little nervous. Yes, I was a little frustrated with the wasted trip, but my status had hardly come up when I made the appointment. I made another appointment and contacted my doctor’s office that same day.
Now I’ve been lucky enough to find in my area a good, old fashioned G.P. who is also an infectious disease specialist and, let me say before I go any further, he’s a great guy and a good doctor. I’m lately of Beverly Hills and a job at one of this country’s top hospitals, so I expect and insist on good medical care. His office is quite efficient and they contacted the clinic to find out exactly what was needed and I received it in well under a week. Now I admit, I am a person who readily takes offense with two major things, ignorance and intolerance. So it was with much dismay that I read a particular sentence in this letter. “John is a long-time patient of mine who suffers from HIV Disease.” HIV Disease? That’s just medically inaccurate. Remember, this letter is written by a medical practice that treats many patients who are HIV-positive. And “suffers from”—that’s just patronizing at the least. I’ve not taken to my death bed, ready to draw my last breath. Believe me baby, I’ve seen that happen more times than I care to remember. I’m a perfectly healthy man with an undetectable viral load living with HIV. And again, my doctor didn’t write this glaringly ignorant statement, someone in his office did. Without malice, certainly, but in ignorance?
Definitely I was righteous in this opinion, convinced that I stood on firm ground in my anger and disappointment. Then, as so often happens to us, the flipside of the coin came up. The person who flipped the coin was not only my dearest friend, whose opinion I take seriously, but also a knowledgable AIDS advocate. According to him, these days, “HIV disease” is term that is sometimes used by medical professionals. I pointed out that most of my treatment for HIV has been received in a major city (there’s the chip on my shoulder!) and, until now, I had never been referred to by anyone in those terms. And the back and forth continued. He provided me some links to mainstream sites that do use that very phrase. I researched some others, and they don’t, but I stand humbly corrected. That said, I don’t care for the term. I am HIV-positive. Ultimately, I’m “living with HIV’ but admittedly getting doctors and others to use the phrase is maybe too much to expect. Many people will agree with me, some will not. Ultimately we each ourselves decide how we wish to be labeled, what boxes we tick. For me, the professionals providing my treatment should take more care with their words.
Now, what I won’t concede: I am not “suffering” from anything! I’m a lucky man. I’m receiving top-notch medical treatment and the virus, for all intents and purposes, has been stopped in its tracks. Yes, people do still die of AIDS-related causes, but, in this country, and in many more, we are receiving treatment. The most hard-to-deal-with response from men I wish to have sex with is the fear that they’ll get it, but I can understand that. What I don’t understand is adult gay men, many of my own age, who truly believe that I could drop dead at any minute. So “suffering from” hits a nerve for me. I get it, the situation is not ideal. If nothing else HIV is a logistical nightmare. Securing the proper medical care and paying for my mind-bogglingly expensive meds is a challenge in a smaller community as well as a large one. This stigma I’ve already spoken of is another. But all in all I have no complaints, I saw the alternative far too often only a couple of decades ago. Now that’s suffering, and it’s terrible. Yet here I am living a very healthy life with everything that could possibly ail me tested and checked and treated. I’m well covered, thank you.
To paraphrase Hamilton’s words, “if you stand for nothing, you’ll fall for anything.” I’ve neglected calling my doctor’s office until now. Tomorrow, I’m going to make my displeasure known.
John Francis Leonard is an advocate and writer, as well as a voracious reader of literature, which helps to feed his love of the English language. He has been living with HIV for twelve years.