by Chuck Willman
Been There, Done That!
Stigma, like history, seems to have a tendency to repeat itself
Sometimes our worst enemies are ourselves. I’m as guilty of this as the next person.
I grew up as a somewhat obedient little Catholic boy, even serving as an altar boy. The rules and expectations were so ingrained into me that challenging or even questioning anything I was taught or told would lead to big trouble in the least, and the threat of going to HELL if I continued my inquiries, or really screwing up.
I later abandoned all organized religion as the dogma was all too confining, and it just didn’t work for me. And I’ve never looked back. (I do, however, respect those who believe and worship.) But the “lessons” I had heard and learned were already deeply implanted in my head. I assumed anything I didn’t want in my head would just go away if I worked at not thinking about it hard enough, which is pretty childish and stupid, actually. I only bring this up to demonstrate how gullible we can be; how easily we hold on to things we’re told or taught even when these things are not true or harmful.
When I found out I was HIV-positive back in 1988, there was a tornado of misinformation and downright lies about HIV/AIDS: how it was transmitted; how fast anyone infected would die; those infected deserved to die. That one was the toughest to hear over and over like a mantra by some politicians, members of the clergy, even members of our own communities and families. While it may have been repeated out of fear, that didn’t make it easy to hear. Those of us who found out we were poz back then remember the feelings of fear, loneliness, and isolation—especially if you didn’t live in a major city with at least some services and support.
Lately, a lot has been written and discussed about the HIV Stigma campaign or “movement.” We’ve made great strides in thirty years; especially when you consider the fact that in those early years of the epidemic we didn’t have the Internet or cell phones or on-line social media. When you think about it, it was an amazing accomplishment: angry, terrified queers banding together out of a need for survival; fighting for medications and other treatments; organizing groups that were initially underground like ACT UP, Queer Nation, and others to make our presence known and demand changes in how we were treated—that we were human beings entitled to dignity and respect, not to mention having the right to live. It took some time, and while we’re farther ahead than we were thirty years ago, we do have a long way to go. But we did it all while many of us were miserable and the disease was already devouring us. We literally dragged or carried each other at times to marches and protests!
But thirty years later—having experienced everything I thought one could experience sans death itself—I seem to be going through something unexpected at this stage of my life. I had worked through the “HIV stigma” I originally felt many, many years ago with the help of a couple of therapists and a support group of other HIV-positive people at different stages of the illness.
However, after all those years of self-searching, and especially forgiving myself for the shame and guilt of being both gay and HIV-positive, some of those old feelings are creeping back into my head. There are days it actually feels like I’ve gone full circle, and the weight is overwhelming at times.
All I have to do is catch someone looking at my withered, distorted body when I’m out, or see my own reflection in the mirror in the morning, and all I want to do is go back to bed for the day. My lab numbers are good: I’m “undetectable” and feeling fine. But thirty years of trial and error medications have taken their toll, and I look and feel like such a monster, which serves as a constant reminder that I’m “sick” in the eyes of society, not to mention my own sunken eyes. I can’t help feeling miserable and exhausted, and those closest to me don’t get it.
Am I the only “old-timer” feeling this way? Is anyone else out there struggling too?
I know I should feel lucky and grateful. But I thought I had dealt with all of this in the beginning. I certainly didn’t expect it to come swooping in again at this age.
“Newbies” have so many resources at their disposal. They’re very, very lucky, and I’m extremely happy for them—well, maybe a little resentful. (Wow! Just typing that sentence leaves a horrible taste in my mouth! But I have to be honest.) The truth is they’ll never know the struggles and agony we all went through before most of them were even born. This generation gap is extremely wide.
Maybe HIV Stigma is something we have to face and tackle throughout our lives. I’d like to think it gets easier, but I thought I had tackled it and wouldn’t have to deal with it at all, ever again. So much for that.
It just might be time to see a therapist again, or at least find the elusive support group of middle-aged folks with HIV/AIDS. I don’t want to waste the time I have feeling miserable, lonely, guilty, or shameful.
BEEN THERE! DONE THAT!
Along with being a contributing writer for A&U, Chuck’s had other work published in journals, magazines, anthologies, and e-books.