Sydney Australia (IAS 4th Conference on Pathogenesis), moments after I told Michael Kirby, former Australian supreme court judge that it was the meds causing my midsection weight gain.
Here is something that happened last week that raises a theme for me.
At a social event held at Sailors by an organization on which I sit on their board, I was having a conversation with someone I hadn’t met before. He started to ask me about the work I do, and I related to the work of this board and the directors of the group hosting the evening.
“So what do you do for work?”……
“This is what I do for work, I work with issues dealing with HIV” I replied. Yet, I was beginning to discover I was dealing with someone who would not let it be. And, this is when I become uncomfortable.
Why? Because if I want to tell someone I’m on disability, I want it to be of my own choosing, not because I’m forced, and I am not comfortable making up bullshit to tell someone. I’ve been way too out there in the public for far to long to start lying.
“Well yes, but where in a hospital, social services?” he continues.
“I’m sit on a lot of working boards and this keeps me very busy.”
“Yes but that doesn’t pay, so what do you do?” Now I’m getting annoyed so I just blurt it out. “I’m on disability, and although I do not officially work, I do much volunteer work which pays me in way such as being able to travel to Africa.”
(yes and I realize this where people go, “Oh those gay guys with HIV got it so easy.”
In an almost incredulous look — which I’ll take as a compliment — I hear “You do not look disabled to me!”
Now here is a point I’d like to make, disabilities comes in all shapes and sizes and are not always visible. People who say such things are not with me on a daily basis to see all the ups and downs I go through, the one entire year it took to get used to the seven drugs I take, including Sustiva (the drug in the once a day Atripla) making me literally going crazy.
They are not there when I’m sleeping for weeks on end, can’t cook food, let alone eat much. Or, for that matter that year and a half when I threw up everything I ate when taking a different drug, or the years I spent viremic (fighting the virus with no drugs) and having fevers everyday, completely exhausted and depressed. I could go on and on.
Instead they see a ten minute snap shot and start with their judgment, and why is it that *I* have to justify anything to anyone.
In any case, now my status is right out there in a conversation where I didn’t particularly want to discuss it. Can I not simply be a guy at a social event, and not some poz guy who now is explaining (yes I know I wasn’t forced to) why I’m on disability.
The clincher for me was when as I was putting on my jacket he reached over and across the table to pat me on the stomach, “Oh you’ve got a belly!”
Let me tell you, the drugs cause metabolism issues and fat doing stuff it normally wouldn’t I’m very self conscious about this. Yet time and time again, gay men who should know better pat us on the stomach and make comments.
I thought, I really should say (and all true) “You know I’ve had an Australain former Supreme Court judge, and the CEO of a Boehringer Ingelheim pat this stomach and comment on it, so if you are going to do that, you better be someone important, as I do have standards.
At the end of the day, I realized, I’m simply going to have to say I work as a consultant in the area of HIV. Depending on the context and the person I may or may not say more.
As for the stomach, I’ve started telling those who do it that this is a result of the medication and it would be very much appreciated if that were not to happen as I’m fully away of the changes of my body, and that you wouldn’t go up to a woman, slap her on the ass, and make a remark about the “junk in her trunk” so please afford me the same politeness.
So, now that I’ve had my two coffee blog posting, how do others deal with this if they have had similar experiences? Do people really know what they are doing when they start commenting on someone’s appearance? Friends have had stuff said to them knowing full well what it was, simply to be mean.
Stuff to ponder.