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Quietly Watching: On Living With HIV as a Heterosexual Man

February 3, 2014

Michael James

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.

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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.

Occasionally we here at TheBody.com are lucky enough to hear from readers who've volunteered to craft their own articles sharing their stories and thoughts. This is one of those articles.

Send "Michael James" an email.


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Reader Comments:

Comment by: Rory (Somewhere) Sun., Feb. 16, 2014 at 1:54 pm EST
I'm a gay man going into my fourth year with HIV, and the people who present themselves in support groups and even online don't look anything like what I see in real life. None of us in real life are suffering from profound mental health problems, homelessness or addiction. We all have jobs and we usually have stable long term relationships (or serial monogamy). We're all generally functional, including those who've seen the darkest days of the virus, before HAART. We don't need therapy, addiction counseling or Reiki, we just need meds and maybe someone who understands how we feel. You could be excused for not believing our existence if your picture of life with the virus was taken from "The HIV Community".

I don't know how to answer your problem. If you're a grownup and hold a grownup job, you can't waltz into work wearing a bright red shirt that says "HIV+". Support groups that start in the middle of the day (or promptly at 5pm) aren't much use to those of us who actually remain engaged in the formal economy. Every group I know of seems to be specific to a demographic I don't belong to. Most of the poz people I know I've met through my personal life. I live in a gay community, so they're my neighbors, friends and lovers. I can only imagine how isolating and frustrating it must be in a community where the virus is rare.

I once saw a web post that suggested forming a support group for positive "professionals". The post was immediately attacked for being exclusive and elitist, of no use to potential members whose health or socioeconomic standing might change. The responders were technically correct, but they missed the big picture, that when people with HIV define themselves as inclusive of everyone but "professionals", they're validating the stereotype that this is a disease which does not affect "professionals".

If you live in a large city, it may make sense to explore the creation of a support group for straight men like yourself.
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Comment by: Invisible (Fla) Sun., Feb. 23, 2014 at 8:00 pm EST
Thanks for this comment and to all of the other people who took the time to weigh in. I got several very nice and thoughtful emails also. I'm glad the site posted my article, so thank you to them also.


Comment by: sindie (usa) Fri., Feb. 14, 2014 at 1:53 am EST
After finding out I have hpv herpes virues and hiv it's been kinda a rollercoaster ride. My family is ok with it and then telling men you have slept with WOW that was hard and scary. My man has never been tested for hiv so it waz time to let him go. Now I feel like damaged goods. Maybe one day I will find love but kinda sacred to tell people that I have HIV...............
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Comment by: Michael (Phoenix AZ) Thu., Feb. 13, 2014 at 4:06 am EST
Thank you Michael!

I am bisexual and have ran into many of these same issues.

Recently diagnosed, I find the support system to be very much geared towards the indigent. The local HIV organization is free for everyone it seems but myself. They won't accept my insurance so I have to pay.

All the support groups are exactly as your say here too. Support for everyone but working males.

Good luck with your child!
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Comment by: Tishawn (Los Angeles) Mon., Feb. 10, 2014 at 1:03 am EST
Very well written and good points were brought about.H.I.V is a ver personal disease.Just because youre not disclosing your disease doesn't make you a fighter.I know people with felonies,ex drug addicts,prostitutes and a women who went to jail for killing her baby(that was due to her post partum at the time), and you can be sure when I found out these things even I stopped to think did I want these people in my life.Its natural to judge people, but that doesn't make it right!As ive gotten older I realize not all business is everyones business.Unless these people can help you then disclosing any past personal info really isn't needed!
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Comment by: Paul (chicago) Thu., Feb. 6, 2014 at 3:57 pm EST
Thanks for the article, I too am Hetero positive and didn't think there was anyone else out there like me.
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Comment by: Anthony (Toronto) Thu., Feb. 6, 2014 at 3:39 pm EST
Dude, I so feel you here. I am gay and I already feel like there is so much stigma and judgment (including from other poz folks) that I cannot imagine how much worse it would be if I was a straight guy. I am lucky that I have some close friends I trust who I feel I can be open with about my status. And some understanding intimate partners as well who I have told (both negative and positive). I get that it would be so much more isolating and tough if I were a straight guy. At least among poz gays, there can sometimes be a sort of "strength in numbers" (even though there is still a lot of BS and stigma for us too).

But generally speaking, no. The risks of wide-scale disclosure way, way, way outweigh the benefits for me. I find that there are some finger-waggers within the poz community who judge you if you are not out. And I find that a lot of these people either do not have jobs (for a whole range of reasons and which sucks, I totally get that), or they have a job at an HIV organization, which means they have more cred/social capital if they are openly poz. For people who have to exist in the normal workaday world, things are just not exactly the same.

I have seen folks at ASOs who practically mandate that everyone come out and I think it's a pretty myopic and potentially dangerous. Meanwhile there was one woman at our local ASO who totally gets it. She said, "I am out and it is a position of privilege; I am out specifically because I recognize that the majority of poz people cannot be out." This was really validating.
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Comment by: Katie (Ohio) Thu., Feb. 6, 2014 at 2:47 pm EST
Yes, Yes, yes! I completely agree. I am a heterosexual female and experience many of the same frustrations at work and through the activist scene. I completely understand. My husband and I feel alone but we're not yet willing to open up to the world for fear of our careers and the judgement it can bring. I've been slowly coming around though and embracing more activism. We shall see what it brings (acceptance/judgement/loss of relationships.
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Comment by: Dee (Indiana) Mon., Feb. 3, 2014 at 11:20 pm EST
Just read your article and I am in the same shape. Your article was so uplifting. Thank you so much for posting.
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Comment by: Invisible (FLA) Wed., Feb. 5, 2014 at 11:17 am EST
You are very welcome. I'm glad you got something out of it.


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