February 3, 2014
For awhile I used the picture of The Invisible Man as my avatar for various sites I was on. You know the one where the face is swathed in bandages but as they are removed there is nothing behind them. It is a symbol for my life with HIV.
As much as I admire the people who are brave enough to come out to the world as HIV positive, not everyone is in the position to do that. Despite the call to action, not everyone can be an activist. Some of us just have to, or choose to, stay in the shadows. Each person has to do the mental gymnastics to determine if the risk is worthy of the potential reward. Is the gamble of going public with your status worth taking a chance that your life, such that it is, will change so drastically that it could actually slide in the wrong direction?
Within the various subgroups of our community, the still working full-time, not receiving benefits group is probably the most underserved. I'm not talking about income, I'm talking about support. Each day I thank the stars that I do not yet have the need for financial help, my health is relatively good and I can fend for myself. But even though this is a good thing, the paradox is I feel like I have to stand alone in life, keeping my status hidden to protect what I have worked so hard to achieve. The day may come when I need programs to get by, but I'll fight that tooth and nail until then.
I've been in support groups and largely had good experiences. The city where I live now has almost nothing that applies to my situation. They are geared around men of color (I was politely told that "it might not be the best group for me"), are for women, for recovering substance abusers or exclusively gay. The moderator of that group suggested that I tell the group that I am bisexual so I would be accepted. I was in a group with all gay men before, and they never had an issue with me, or I them, so that statement was especially off-putting. The one group that might apply is right in the middle of the day. It is pretty hard for a working man to leave the office for two hours every week without having an explanation.
Working is an interesting environment. The office is where most people develop friends and sometimes even relationships. It is also where you hear some pretty callous comments about people in our condition. These can range from crude jokes to proclamations that all people with AIDS should be segregated and eventually they will die out and the virus will die with them. The scary part is how many people nod in agreement, while you stand there stone-faced wanting to "tune them up", but afraid of what the consequences may be. Instead, in my case, I keep people at arm's length, never getting as close as I want to, so those kinds of situations happen less frequently.
The worst for me was the occasional female worker who was interested in me, makes an obvious attempt to get to know me and I cannot reciprocate. I have a list of excuses to draw on to deflect them. I've become pretty adept at this actually, but can't help wondering it perhaps she was the "one" who might be able to understand and deal with it OK. I finally took a job that allows me to work in a home office most of the time, so these workplace issues have largely disappeared. Of course with that comes an increased level of isolation, so there is bad with the good.
I do have several friends with HIV/AIDS. Not local but scattered around the country. We are mutually supportive as much as we can be from long distance but again some are activists, most are barely getting by on disability or in very poor health, so there are times when we don't always connect as well as we should. There are times that I feel guilt about doing OK superficially while at the same time am a little envious that they don't have to hide their status. I do resent the pressure to come out, become an advocate for the poz folks and let the chips fall where they may. It is a source of friction, easier said than done and while it may be "liberating" I prefer to offer support one on one. At this point in my life I simply have too much to lose to be totally open.
I've told a select group of negative people about my status, and most have been at least sympathetic, however I've experienced the "friendship drift" like most of us have. They say they'll be there for you, but the messages left go un-returned. You learn your lesson after awhile and quit reaching out. To be honest, if the shoe was on the other foot, I might react completely the same. One never knows how they will deal with a specific situation until they, themselves, are faced with it, so I don't take the rejection personally any longer.
One interesting dynamic is the scenario where female friends suddenly come to YOU for support and guidance about their relationships. I suppose since they have eliminated you from the pool of potential suitors, they feel that you are good enough to be the "love doctor" but not good enough to date. They usually disappear when that crisis is averted. That sounds a bit angry, but in truth, I see it for what it is and am glad to help. True, I feel a bit used, but that is how life is in and out of the HIV/AIDS world. There are probably more takers than givers in the world so if you are aware of that, it is all good.
So what do you do? You push through, fight the good fight and don't give up ... all those cliches that are totally appropriate. I'll work hard, try to stay healthy, get my kid through college and continue to build the protective walls around my life. Walls have two functions: to keep things in and to keep other things out. Maybe things will change, but for now I think I'll put on another layer of bandages.
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