HIV = Hope Is Vital

Life with HIV: Putting the pieces together. Social psychological and communication perspectives, personal narratives, and discussions of popular discourse surrounding HIV. Offering hope and information for persons living with HIV, researchers and academics, and the general public.

A million brains are better than one. Promoting collective research.

Is HIV a chronic illness or a terminal illness?

20 years ago getting an HIV-positive diagnosis was considered by most health professionals to be a "death sentence." It signaled a time to get ones "affairs" in order (meaning end-of-life affairs) and few medications were available to prolong, much less extend indefinitely, the life of an HIV-positive person. Many people including myself remember these times when public discourse surrounding HIV was colored with fear, degradation, and shame. Those who tested positive in 1988 for our generation's black plague had little hope of seeing 2008, because living 20 years with the virus seemed to be an impossible feat.

I clearly remember seeing a public service announcement about AIDS that featured Madonna when I was 10 years old and I remember my heart skipping a beat because the message was so grave. Protect yourself from AIDS, or else... Some of you may remember this PSA:

But like so many others who saw it, I was terrified, but never really thought it could happen to me. I never thought Madonna would still have a career 20 years later either, but that's a different post all together. =)

So here I am now, 20 years later, and I have AIDS. But as time has progressed the discourse has begun to shift from characterizing the disease from a "terminal illness" to a "chronic illness." "AIDS is the new diabetes," I heard a colleague say in class one day, and I found myself with conflicting emotions. Parsing out these emotions has revealed a tension between the two terms that I have yet to reconcile.

HIV is a chronic illness. I believe the underlying reasons behind the public discourse that engenders the notion of HIV as a chronic illness is one of ostensible hope and victory over a disease that has haunted our society for so long. The purpose of characterizing the disease as "chronic" serves the direct purpose of removing the "death sentence" connotation that has been attached to it. To see HIV as a manageable disease takes it one step away from "terminal" and one step closer to "curable;" and this of course is a step in the right direction.

I can't express enough how thankful I am for the researchers who have worked so hard in the last 20 years to make this characterization even a possibility. I and millions of others literally owe our lives to them and if the characterization of HIV as a chronic illness eventually removes the debilitating stigma attached to the disease, then I believe that the use of the term alone will have saved millions of additional lives.

HIV is a terminal illness. But with these profound medical advances come profound consequences. When HIV was characterized in public discourse as a terminal illness there was a sense of urgency and community that I believe is strongly lacking today. The fear is not as heart-stopping, and because of that the practices that spread the disease are not as vigilantly expressed to the public. The public has grown fatigued of the message of safe sex and HIV, and because of that the disease continues to spread and the new threats this disease pose are largely ignored.

So what if a chronic illness is spread, some might argue. Everyone has some sort of disease these days, right? I know of many gay men who wait for the inevitable day that they will contract the virus because it's just not that frightening anymore, and sex without condoms is so much more exciting. A friend of mine recently relayed a story to me of her roommate who had just tested positive. He came home after his doctor's appointment, nonchalantly shrugged his shoulders, and said "Well, I finally got it! I'm one of the boys now!" and merrily went on his way to another night out on the town.

Stories like this break my heart, not because I want the newly infected to be devasted; I wouldn't wish devastation and heartbreak on anyone. It breaks my heart because I know that the information young people are receiving today about HIV is incomplete. Yes, we've reached a point where we can live longer; and yes, the quality of our lives can be much higher than they were for those infected 20 years ago.

But HIV is no picnic my friends even with treatment that works. But in order for that treatment to work, you must be 90-100% vigilant about taking your medications every day, or that pesky little virus will mutate and those medications will not work anymore. Or the virus you just contracted could already be resistant to some of the newer medications we have available today, and if left with only the options of older medications, you may experience horrendous side effects. Worse still, if your virus is resistant to most or all of the medications we have, you'll be forced to wait for science to create another medication that attacks the virus in a whole new way; and you may not have the time to wait for it. And even worse still, if you are not aware that you've contracted that virus and spread it to others, you may have just participated in spreading a virus that we have no medications for that will prolong the lives of those infected with it, much less extend their lives indefinitely. Sound familiar? It should, because that's exactly where we were 20 years ago; with a virus that was nearly untreatable and considered by most as a "terminal illness."

And this problem of mutations is only one of dozens of potential situations that could bring us back to exactly where we started. I want nothing more than for all of us to see 2028 and 2048, and beyond. But as we move forward with our futures with this disease, let's not forget about our past, because as the old adage goes, we are bound to repeat it.

1 comment:

Heather said...


I have a quick question about your blog, do you think you could e-mail me?