An Honorable Disease

When I read this a few weeks ago, it pissed me off so much that I almost spit out my dinner:

“To imagine that it’s just like every other disease — like cancer or diabetes — is false,” said Tracy Welsh, executive director of the HIV Law Project. “Getting a positive test result is something that turns somebody’s life upside down.”

Let’s talk for a minute here.

I understand that HIV/AIDS is, in numerous ways, different from many other diseases. First and foremost, it is a communicable disease, and a very stigmatized, sexually-transmitted one at that. It requires a different disease control approach due both to its nature and to its history. I get it. I understand.

What I do not understand, though, is why individuals with HIV are considered by some to be so much more “heroic” than those with other diseases. I don’t understand the suggestion that dealing with HIV is somehow more “significant” and “devastating” than dealing with any other life-threatening disease. I don’t understand this woman’s implication that being diagnosed with HIV “turns somebody’s life upside down” while being diagnosed with cancer or diabetes is apparently just a fucking walk in the park.

Like Cancer or Diabetes:

In 2001, I lost one of my oldest friends. Stan died at age 46 of heart-related diabetes complications. Because he was so young, and because he was a homosexual male, many of my acquaintances were surprised to learn that he hadn’t died of AIDS. Human nature being what it is, I understood on some level.

But in a few of these acquaintances, I noticed something a little deeper. It was almost imperceptible, but it seemed they were ever so slightly disappointed that he had died of something other than AIDS. Somehow, it was almost as if his death were somehow slightly less tragic, just a little less significant, because he hadn’t fallen prey to “the” disease.

I’ve talked to a couple of other people who have had similar situations over the years, and it really bugs me. It’s as if there’s some sort of Klingon death ritual and young homosexual soldiers aren’t considered to have died honorably in battle unless they succumb to this particular malady which is, as we all know, not a gay disease.

Five years later, my friend Stan is no less dead for having died of diabetes. I think it’s safe to say he was rather devastated by it.

Upside Down:

To make it more personal, I was myself diagnosed with cancer this past February. It was later revealed that I had an early stage lymphoma that would probably respond well to treatment. For the first month, however, I had no real idea about my prognosis. I went to bed every night wondering if I was going to die within a year or two. I still wonder how much my lifespan may have been shortened by the stress of the cancer and the ensuing radiation therapy, and I probably will for the rest of my life. And there’s no guarantee it won’t come back.

In those first few weeks, I cried. A lot. My husband cried. My parents cried. Hell, my doctor even got weepy.

I had CAT scans and PET scans and blood tests, one of them, ironically, an HIV test. I also had a partcularly unpleasant procedure known as a bone marrow biopsy, which involved yanking out some bone tissue and some marrow from my pelvis using a stylus and a hook — while I was wide awake. It was rather strenuous; the doctor was red-faced and sweating like a pig afterward. I didn’t feel so hot either.

Once my diagnosis was certified, I spent three and a half weeks with blue marks on my chest and had a large nuclear weapon aimed at my chest every morning at 10:00. There’s a quite good chance that I’m cured now, but I’ll never know for sure. I’ll be paranoid about every ingrown hair or pimple or bump I get for the rest of my life. And insurers will be somehwat reluctant to touch me for the foreseeable future.

My experience with cancer was very mild compared to many other people’s. And yet, I’d say that my life has been pretty thoroughly turned “upside down” by it.

Why Am I Telling You All This?

I’m not telling you all this because I want sympathy or your good wishes. That’s why I hadn’t mentioned the cancer before, and I don’t really plan to mention it again unless it becomes an even bigger issue at some point in the future. It’s not something I plan to spend a lot of time thinking or worrying about if I can help it. I only mentioned it today because this miserable HIV industry spokesmoron pissed me off so much.

I’m not telling you all this because I think more money should be spent on cancer research than on HIV/AIDS research, because I don’t really have an opinion on that subject. I don’t want more attention paid to “my” cause than to someone else’s. I don’t even have a cause.

I’m not telling you all this because I want to minimize the suffering of persons with HIV nor the impact of the disease on their lives. I have had many close friends with HIV over the years, and I’ve lost several of them to it. I know how bad it is. I also know, though, that heroism and honor are found in just about the same proportion among HIV-positive and HIV-negative indivduals. Having HIV (or any other disease) doesn’t make an individual any more brave or heroic than not having one.

I am telling you all this because I think we need to remember that there are other diseases that are just as devastating as HIV to the individuals involved. When a life is threatened, someone is generally pretty devastated by it, no matter what the cause. To suggest otherwise is insensitive and obnoxious.

I thus suggest that Tracy Welsh occasionally leave her little HIV industry bubble and see the rest of the world. She might be surprised that people with HIV are not the only ones on the planet whose lives are turned “upside down” by potentially fatal diseases.