Question:

There is no easy way to hit someone in the face.  It hurts no matter how it’s done. Telling the world…very bad idea.  Telling anyone is an issue to seriously consider before hand.  My life will never resemble Norman Rockwell again. Even though I am hetero, married, and clean, there are the Philistines that still enjoy labeling, persecuting, and ridiculing.  I have been called names, pitied, avoided, caused fear in people, hell, I have even begun to do all this to myself. All I was given was the establishments view at first, now I know the other side.  Now I am totally confused, damned if you do, damned if you don’t. In one way it has been a gift, when I listen to things, I really hear it, when I see things, I see all sorts of detail, when I cry, I really cry, when I laugh, I still know I am hiv+ but I still laugh.  I don’t feel sorry for myself however, I hate it that I can not give my wife the child she deserves.  I hate it that my mother is broken hearted, I am sad that I may not see the twin nieces graduate.  I want badly to see all the construction projects around town completed before I move on. Thank GOD for my caregivers, family, friends (very few true), and pets. They are the angels GOD has given to me.  A caregiver can be the greatest thing to come along or the worst nightmare.  Sincerity is the key.

Response:

Hi! After reading the messages, I wasn’t sure anymore wether this newsgroup is about AIDS or homo-heterosexuality, but after checking the newsgroup name, I thought I’d give it a go. I am writing this message for my sister, who is doing a thesis in nursing on caregiving in AIDS, particulary on how to ‘break the news’ to a tested patient, how to help him ‘telling it to the world’ or accept his/her situation and related items. Does anybody have any good references to sites, books, or journal articles on these topics or HIV-patients caregiving in general ? The subject is of a psychological, not a clinical nature. I don’t need any treatments, just ‘how to communicate’ things. Thanks, Jeroen

Response:

Jeroen: After reading the messages, I wasn’t sure anymore wether this newsgroup is about AIDS or homo-heterosexuality,

Ron: Or about debating ancient ideas

Jeroen: but after checking the newsgroup  name, I thought I’d give it a go. I am writing this message for my sister, who is doing a thesis in  nursing on caregiving in AIDS, particulary on how to ‘break the news’ to a tested patient, how to help him ‘telling it to the world’ or accept his/her situation and related items. Does anybody have any good references to sites, books, or journal articles on these topics or HIV-patients caregiving in general ? The subject is of a psychological, not a clinical nature. I don’t need any  treatments, just ‘how to communicate’ things.

Ron: – Hide quoted text — Show quoted text – Oh boy those are tough questions. I don’t think there is any painless  way to break the news. It’s akin to getting the news of the death of a loved one. Just a little personal note. Over the years I’ve attended several "support" groups.  Frankly, I’ve grown weary after 12 years of being told that "acceptance" is the key, hugging teddy bears, and being asked how I feel about so and so… I have a terminal illness, whether I accept it or not.  If I was happy about it someone would lock me in a white room. And the next point you bring up is "telling the world".  I don’t think that is such a good idea.  There are still many vicious and hateful bigots that enjoy the site of others misery and there are those who are simply ignorant.  I tell those who matter to me and even that can backfire.

I agree with Ron – there is no painless way to communicate the concept of terminal illness. In Canada your chart officially says "chronic viral patient". My opinion is that HIV is a horribly misunderstood virus and solid medical information should be supplied with the diagnosis. I was handed a few pamphlets but I had to log onto the internet and go to the bookstore to get a proper idea of what I could expect and what this was all about.  Many people will not have the resources to get this information. So, I guess my advice would be to make all efforts to inform the patient – so they are not overly optimistic nor pessimistic but can make rational decisions based on the facts. Some folks, for instance, would latch onto the HEAL position (pathological denial, if you ask me – but that’s another issue) and others onto the "let me make a will today and prepare to die" position. Somewhere in between is the reality. There are many wise words written on the role of the caregiver in other terminal illnesses (cancer, most notably) and I think the advice is more or less universal with the one caveat that this illness, HIV, carries with it a certain social stigma as well – one that cancer or heart disease or any other illness does not have. Perhaps this is the component that needs special attention when handling the situation. I don’t know where I stand on "telling the world". I think there are those that need to know and those that don’t. And each person must make the decision as to who needs to know and when they need to know. No cut and dried rule on this, I think. Catherine Jamieson

Response:

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