My Life On The “C” List (Part 2)

After writing my last post, My Life on the “C” List (Part 1) … I started thinking about the nature of the club I just inadvertently joined. It’s starting to become fairly clear to be that there is something different about being on the “C” list … as opposed to being on other similar lists, if they even exist. Do people diagnosed with other illnesses get to be on the same kind of list? For some reason, I don’t think so. Or, if the list exists, I don’t think it’s exactly the same.

In the first week of July, 1994, I was diagnosed with AIDS after having spent the better part of the entire month in the hospital. First, I got the flu, and then the appendix ruptured. I got the flu again after that, and then it was pneumonia. And not just any pneumonia – it was pneumocystis pneumonia, or PCP … the kind you get with advanced HIV disease. Oops. Because my last HIV Test, which had been six months prior to this, was fine (negative), the doctors put me on some pretty awful pills (HIV Meds back in those days were NASTY!) and pretty much told me I had about six months, if that, to put my affairs in order.

To make a long story short, I pretty much told that doctor where to go and shove it and went looking for a better doctor. I like to think I found the best one Denver had to offer – he sat on several HIV-related boards, spoke at the National HIV Conferences… I figured he knew what he was doing. Sixteen years later, I’m still here, so I think that was the right decision. (That’s Doctor Greenburg!)

Anyhow … being on the HIV/AIDS List isn’t anything like being on the “C” List. While I am not trying to compare AIDS with Cancer … they are two completely different things … they do have a few major similarities. Namely, they’re both horrible incurable diseases (although, with the right treatment plan, both can be highly manageable) … both diseases have killed a great number of people … the treatments for both diseases can be fairly severe …

One of the major differences between the two “Lists” is that you rarely, if ever, see anybody on the “HIV/AIDS” List. How many HIV Positive celebrities can the average person name? Rock Hudson, maybe? Or, sports stars like Magic Johnson or Greg Louganis? And … Um … Ok …

What about celebrities on the “C” List? Well, there’s Suzanne Somers, Olivia Newton-John, Melissa Etheridge, Sharon Osborne, Jerry Orbach, Colin Powell, Arnold Palmer, Lance Armstrong, Sheryl Crow, and … and …. Goodness, I could certainly keep going, but you get the point.

Is this just a case of more celebrities having cancer than celebrities having AIDS? Maybe. But I am not totally convinced.

I would be lying if I said there still wasn’t a certain stigma attached to HIV/AIDS. This has been going on since the early days of the epidemic when the largest number of people testing HIV+ was gay men and those doing intravenous recreational drugs – not exactly the most accepted groups by society at large. Even today, that sentiment remains, even though the statistics quite clearly state otherwise. Maybe people have been saying that for so long that it is hard to convince them otherwise. Or, maybe people just don’t like these groups and are still trying to find an easy thing to strike them down with.

When I was first diagnosed with AIDS, it was hard for me to find someone to talk to … someone who had been through it and knew what I was going through. Now, bear in mind, I was diagnosed in the early 90s, before Protease Inhibitors and other meds came out that have helped expand the life expectancy of people living with AIDS, but it wasn’t quite like it was in the very early days when nobody really knew what was going on. However much I tried, I it was very hard to find someone I could relate with. I tried being open and honest about my status, however that seemed to make a lot of people run away screaming. I tried going to support groups, but found very little support. (Most were nothing more than moderated complain and moan sessions.) I talked with doctors and psychologists … but … for the most part, I was left to figure things out on my own.

Having worked in more recent years around HIV/AIDS Education and case management type services, I’ve noticed things have gotten a wee bit better … although in my humble opinion, it could still get quite a bit better.

Whatever the reason, people with HIV/AIDS get much different reactions from people (in general) than people do with cancer.

It does make me wonder, though … What about other illnesses? Do people with, say MS have the same kind of network as people with cancer do? How about slightly more common diseases like Asthma or Diabetes? Parkinson’s? How about Mental Illnesses like depression or bipolar disorder? PTSD? … Any other diseases …

Quite frankly, I don’t know.

And I wonder what that means.

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