Husband has HIV and always describes himself as being "sick"

[spoiled]

Whenever he's bringing up the topic of his status he describes himself as being "sick".  I told him today to stop saying that, that he doesnt have AIDS, he takes his meds and is undetectable.  Is it normal for those with the virus to refer to themselves as "sick" or is it okay for me to tell him his attitude is negative and not to refer to himself that way.

[Matty the Damned]

In general it's unwise for HIV negative people to "tell" positive people how their stuff is. HIV is different from other terminal/life threatening illnesses because there is a terrible stigma attached to it and in the strictest sense you've gotta have it to know what it's like.

That said many of us, myself included, can oftentimes have an unduly negative view of the actual state of our health. If I were you I'd take care when discussing this issue with your husband that I didn't come across as hectoring or giving stern lectures.

The key here is to be supportive and to offer the facts of the situation in a positive light.

MtD

[wishihadacat]

Allthough he is undectable, your post doesn't describe what, if any, medical issues he's had  and I hesitate to be judgmental without knowing more, but frankly, it sounds like your husband is feeling sorry for himself. I don't know what your husband means when he says he is "sick".  It isn't easy for many of us, and we all have different physical responses and different medical issues. Some of us have few or no difficulties at all, but many of us have serious issues with their meds, and many of us are struggling to stay alive.  If your husband is otherwise "healthy",  perhaps he is just using his HIV an excuse not to live a more productive life.  On the other hand, as Matty says, the stigma is a serious problem, and that may be part of what he is experiencing, and he needs your support. You guys have to work this one out.

[imjustagirl]

In general it's unwise for HIV negative people to "tell" positive people how their stuff is. HIV is different from other terminal/life threatening illnesses because there is a terrible stigma attached to it and in the strictest sense you've gotta have it to know what it's like.

That said many of us, myself included, can oftentimes have an unduly negative view of the actual state of our health. If I were you I'd take care when discussing this issue with your husband that I didn't come across as hectoring or giving stern lectures.

The key here is to be supportive and to offer the facts of the situation in a positive light.

MtD

Can I ask you something honestly, Matty?  Do you really believe that if someone has not actually CONTRACTED HIV, that it somehow means they cannot be empathetic to someone who has?  I think your suggestion that a NEG person giving advice or support to a POZ person is wrong is incredibly misguided. So basically, because of the nature of this disease/condition/diagnosis, no one who is negative should ever dare to offer their point of view or perspective because they can't understand?

Seems to me that perpetuates more of the "stigma" you speak of than it helps.

I don't see from what was written that this wife has in any way "hectored" or "lectured" her husband, but tried to redirect him out of concern. If someone as close to this man as his wife can't offer support or comfort, then who, exactly, should?

I personally have seen the emotional upheaval this has done to people I know who are infected  Even though I am NEG, I don't see anything inappropriate in her wanting her husband to change his point of view for his own well-being. I'm not saying not to let him grieve and deal in his own way, but don't let him wallow or drown in it.  Wouldn't that be FAR worse than anything condescending she might say?

Sometimes it takes someone else's perspective to right thinking that has gone wrong.

[Matty the Damned]

Listen Girl,

Can I ask you something honestly, Matty?  Do you really believe that if someone has not actually CONTRACTED HIV, that it somehow means they cannot be empathetic to someone who has?  I think your suggestion that a NEG person giving advice or support to a POZ person is wrong is incredibly misguided. So basically, because of the nature of this disease/condition/diagnosis, no one who is negative should ever dare to offer their point of view or perspective because they can't understand?

Seems to me that perpetuates more of the "stigma" you speak of than it helps.

I don't see from what was written that this wife has in any way "hectored" or "lectured" her husband, but tried to redirect him out of concern. If someone as close to this man as his wife can't offer support or comfort, then who, exactly, should?

I personally have seen the emotional upheaval this has done to people I know who are infected  Even though I am NEG, I don't see anything inappropriate in her wanting her husband to change his point of view for his own well-being. I'm not saying not to let him grieve and deal in his own way, but don't let him wallow or drown in it.  Wouldn't that be FAR worse than anything condescending she might say?

Sometimes it takes someone else's perspective to right thinking that has gone wrong.

I don't know what bug you have up your arse (and to be "honest" I don't really give a fuck), but it seems to me that the only reason you post here is to try and pick a public fight with me.

Don't bother. You won't win and you'll be badly mauled in the process.

If you really want to pursue these issues with me I invite you to forward your various concerns to me via PM or even better, in an email. You'll find my email address in my user profile.

But you would be wise to exercise caution before firing off a prissy missive to me. Think carefully before you bandy words with Matty the Damned. Many have tried. None have succeeded.

You are not as clever, witty or hate filled as you think you are.

More importantly, stop hi-jacking threads like this one with your pointless troublemaking. This thread is about Spoiled's husband. It's not an opportunity for you to grind your blunt little axe.

Remember, don't reply to this. This thread isn't about  you.

Be well,

MtD

[anniebc]

Girl

Please stick with the OP...quoting others and hi-jacking threads are pointless and doesn't help in the least, if you want to be helpful or supportive as you claim then listen to what Spoiled has to say,...this is her thread, and you would do well to remember that.

Jan

[J.R.E.]

Hello Spoiled,

Is it normal for those with the virus to refer to themselves as "sick"

I am going to give you my thoughts and opinions on this, so please bear with me. I'm going to try to not,  go all over the place here. Sometimes, It's easy for me to do that, so try to stick with me. If I wander around, please come back and ask me to clarify. I will probably end up editing this a few times !!


In all the years, that I have lived with this virus, I really only thought of myself of being sick, on a couple of occasions. Personally, I don't consider myself sick because I am HIV positive. I am also undetectable. I consider myself someone who is HIV positive, who has already had an Aids diagnosis, and one that's trying everything reasonably possible to avoid getting "sick", or avoiding getting sick, for as long as I possibly can.   If I confided in someone, and told them I was HIV positive, and they responded back to me,"How long have you been sick?" I would probably get a little ticked off. I would respond, "I am not sick, I am HIV positive." ( that's me).

The first time, I felt sick was in 1989, four years after I contracted HIV. I came down with a severe case of Shingles,  I would not only describe myself  as  feeling sick, but in all honesty, I felt as though I was going to die.


The second time I felt "sick", was probably the year or so  prior to starting antiretrovirals. There were some very difficult days throughout that period of time, where describing that I was "sick", was probably an understatement. A 30 pound loss of weight, esophageal thrush, fatigue, definitely made me feel "sick". Once again, that is an understatement. People told me I looked "sick"


Spoiled, I don't know what your husbands current numbers are,  Or what he may be currently going through physically or emotionally, his doctors will have to determine that.


I consider being sick, ( and this is my own thoughts )  when I have a cold, or the flu.   I haven't had the flu in probably 15 years. When I get a sore throat, running a fever, and body aches, and I am forced to stay on bed a day or two, I consider myself sick. Anything else, I consider it a long term effect of being HIV positive for close to 23 years, dealing with an aids diagnosis,  and allowing myself to get to the point I was, when I started on meds. ( which was 16 t-cells and a viral load over 500,000)


I have several things, going on which causes me discomfort. Neuropathy, Tinnitus,  neck aches, differant skin problems, including HPV., But I don't associate these thing with being "Sick", I associate these things with being HIV positive.


When I am having a "bad day"--NOT a sick day ( which is what I like to refer to it as) I let Ed ( my partner) know that. In most cases though, I don't have to tell him. After a relationship that has lasted , close to 28 years, he "knows" when I am having a bad day. He can tell it, in how attentive I am, he can notice it in the way I walk. He can notice it in my face and how I look. He can tell it in my voice. I can also tell you , that those "bad days" happen more frequently than I like, but at the same time, I don't ( or wouldn't) call myself "sick"


I don't know if anything I said here, may be helpful to you. I haven't read any of your previous posts, so, I have very little knowledge of what your husband has gone through , since his diagnosis.


Take care of yourself-----Ray

[SouthSam7]

Speaking for myself.  Sometimes my family forgets that I do have this disease, and don't make simple accommodations for me (such as allow me to run by the house to take my meds, or be understanding when I need a nap).  When I've had enough I will remind them by telling them "Don't forget I'm sick!", even though I'm technically not. 

After I bring this to their attention, they admit they forget that I have HIV and then they are good for about a month or two.  Then I have to drop the H bomb again.  Why do you think your husband is telling you or others he's "sick"?
Sam

[md]

Whenever he's bringing up the topic of his status he describes himself as being "sick".  I told him today to stop saying that, that he doesnt have AIDS, he takes his meds and is undetectable.  Is it normal for those with the virus to refer to themselves as "sick" or is it okay for me to tell him his attitude is negative and not to refer to himself that way.

Spoiled, if I were you I wouldn't get too hung up on the exact words that he uses to describe the way he feels.

As you have already seen in this thread, different people will interpret them and react to them differently.

What matters is to try to understand what is behind the words and, to the extent that you can, how he is feeling.

For example, you say that he describes himself as being "sick" "Whenever he's bringing up the topic of his status".

OK - so he doesn't use the term all the time - just when he is discussing his status - so is that something that comes up every few months, weeks, days, hours or minutes, and *why* does it come up and how do you and he discuss it when it does come up. I suspect that thinking about those things may be more helpful that just focusing on those specific words.

[Teresa]

When Hubby found out, he got the AIDS diagnosis. After a few days in the hospital for meningitis, and a bout with shingles he is doing great. He has never missed a day of work for anything HIV/AIDS related. He is lucky that he hasn't had any bad side effects from the meds.

Does hubby consider himself sick because he has HIV, don't think so and I know I don't. I too wonder why he says hes sick when talking about his staus.

Hugs
Teresa

[BT65]

Spoiled, I really don't discuss things having to do with HIV other than with people who have HIV.  If I ever do, some people seem to think I'm wanting pity, and remind me how "good I have it."

I don't know the particulars of your husband's situation i.e. how long he's been diagnosed, his numbers etc.  Perhaps we all have our own level of being "sick."  Maybe you could suggest he seek others in your area who are HIV+.  Because in all actuality, one really doesn't understand the full impact of having a disease unless they have the same. 

[edfu]

I'm a "glass-half-empty" person, suffer from depression, and tend to view most things in a negative fashion--in spite of years of therapy.  Thus, while I do not say I am "sick" (except mentally, because of my neuroses), and my VL is undetectable and my CD4 count is just above 500, I will, when pushed against the wall, say that I have a chronic illness requiring lifelong medication, like diabetes.  If I have to take medication every day, then it is impossible for me to claim that I am "healthy."  I will also, in my darker moments, state that I have a potentially terminal illness.  No one knows if my virus will mutate and become resistant.  No one knows if my Kaposi's sarcoma, which can occur at any CD4 level, will return (though it is in remission at present).  People who have been doing fine with HIV can suddenly become very sick indeed, and HIV+s still die every day. 

I apologize for stating such a gloomy position, but I know I am not the only one feeling this way.  I also know that I am in a minority.  I was infected in 1982 or earlier and would not ever be tested--until KS showed up--because I always felt that I would become suicidal if I knew I was positive.  Most of this is due to my involvement with AIDS from the very beginning, in 1981, when I watched most of my friends die.  I have never been able to change my psychological reaction since then.   

[vivyt]

I have a question and this may be off topic and if it is I am sorry. How long did it take after the diagnosis to feel "not sick"? It has been almost a year since I was diagnosed and was VERY sick with an AIDS label. Now I am undetectable but I am still having a hard time coming to terms with it all.

[wishihadacat]

I have a question and this may be off topic and if it is I am sorry. How long did it take after the diagnosis to feel "not sick"? It has been almost a year since I was diagnosed and was VERY sick with an AIDS label. Now I am undetectable but I am still having a hard time coming to terms with it all.

Its not off topic at all. Its still a little unclear what Spoiled meant when she wrote that her husband complained that he was sick, but it sounds as if he is going through the same period of adjustment as you are, and I'm pretty sure we all did.  It sounds a little sappy, but you have friends here, if that helps. He'll make it too.

[Winiroo]

Seems pretty silly to me.
I dont have really any info on Mr. Spoiled other than he is positive and undetectable without an AIDS diagnosis.
I dont want to accuse Mrs. Spoiled of henpecking his use of verbiage. But honestly it seems really petty.

Mrs. Spoiled let Mr. Spoiled know that the use of the word sick bothered her and if he is sensitive to that he will try to refrain from using it in the future I'm sure.

I assume that the use of the word sick is bothersome because it is a reminder that he infact is ill.
Its perfectly normal to hate that the person you love might be suffering in some way.