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Author Topic: is it "normal" to have HIV?  (Read 8367 times)

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Offline Dragonette

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is it "normal" to have HIV?
« on: August 26, 2007, 09:25:35 AM »
It kind of dawned on me after I wrote to Queen that after a certain age everyone starts to have some health problems which are private more or less.

Why do we treat HIV like a Deep Dark Secret?

I mean, the social reasons are obvious. But how many of us regard it like that in relation to ourselves, within ourselves, in our private self-talk?

I mean, as you age, you accumulate conditions. Many people in the west are diabetic for instance, have blood pressure, heart problems, vericose veins, you name it.

80% are CMV positive, 50 are toxoplasmosis positive and about 50% HPV poz

women have a collection of gyno problems, some as a result of STIs and some just inherent. Breast cancer hits 1 in 9 women

no matter how healthy we live we will collect some conditions, some preventable, some not

why do we treat HIV so differently. I mean someone here once stated, those who have unsafe sex and do not contract HIV, or "just" herpes, are not ashamed. They don't let it define them.

why do we do that? why did I let it change me so profoundly. I have had it for so many years and only when I found out, the shit hit the fan in terms of self esteem, but why? what if for argument's ake I had been born with it and found out later, would it change everything too?

I know the negative voices of society, but why do we internalize them so much? They are illogical and don't make sense. They don't make sense because it's just a disease. A difficult one, an awful one, but it doesn't carry any value, beyond the value of a virus entering the cells, like any other virus. It only carries the value that we assign to it.

Even identifying as HIV poz... in fact you identify as poz and that implies HIV. An identity. People don't identify as herpes poz or hepititis poz, they see a condition as interefering with their lives but not their lives as synonymous with that condition.

anyone see what I mean?
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline HealthyMomma

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Re: is it "normal" to have HIV?
« Reply #1 on: August 26, 2007, 11:05:26 AM »
Wow this post couldn't have come at a better time! Its like you are in my head! This is something I have been struggling with the last few months. I'm not sure why we feel the need to hide it....and quite frankly, I am sick of hiding it! Thanks for this post!

Offline mesu

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Re: is it "normal" to have HIV?
« Reply #2 on: August 26, 2007, 09:36:09 PM »
I totally agree. I was wondering about it myself the past few weeks (i just got diagnosed). Since i am still new to this and i did some research to learn about the disease. HIV is just a virus in the body..although it could be serious, it is not like it will affect other people's normal daily life. To me, it is a kind of STD that needs constant treatments and monitoring.  Yes education about not spreading it is very important.   I think the bird flu, or SARS are much much worse, as those virus can be transmitted through air and sneeze...

i was told that a lot of countries do not accept application of permenant residency of HIV+person...it is pretty unreasonable. That tells a lot about how the government of many countries think about HIV. it is sad.
Jan/Feb 07 - infected :(
Sept3: cd4 162; 13.5% VL 24,000
Oct5: cd4 68 13.6%
Nov6: cd4 205  14.64%
Dec10,07: cd4 188  15.67%  VL: 9900
FEB15,08: cd4 242 18.62%
Mar10/08: cd4 219 15.64%  VL: 7300
May26,08: start Truvada and Sustiva
July 18,08: cd4 255, 18.50%, VL undetectable (<75)
Nov 4,08: cd4 380, 27.14%,
Feb 6,09: cd4 296, 22.7%,
May 26: cd4 351, 27%,
Aug 28: cd4 310, 28%,
Dec 2009: cd4 321, 35.67%,
March 2010: cd4 325, 32%,
June 2010: cd4 385, 29.5%,
Sept 2010: cd4 368, 30.75%,
Feb 2011: cd4 431, 43.1%,
Jun 2011: cd4 433, 30.93%,
Sept 2011: cd4 435,  36 %,
Jan 2012, cd4 467, 33.36%
May 2012: cd4 421, 38.21%,
Sept 2012: cd4 393, 30.23%,
VL: undetectable since July 08

Offline leatherman

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Re: is it "normal" to have HIV?
« Reply #3 on: August 27, 2007, 12:03:32 AM »
First off, you're not crazy for thinking this is a crazy situation. Being in an epidemic is crazy situation. My other thoughts, while based in psychology/sciology, are from an American's viewpoint; but I'm sure you'll get the point.

The great American mass media/culture/market at one point defined HIV as the "gay disease". Therefore it is to ALL the world. (I love America but we are arrogant and do try to force our values onto others sometimes. Why else would every other country have a MacDonalds?) And as an American opinion, it's deeply reinforced onto our society through religion. If the Christians say that it's wrong, it's wrong. (I don't have anything against religion. I was raised fundamental Baptist in the South. But for thousands of yrs of mankind, religion has been a power over us, controlling us. Why should it be any different today?) So the simple equation is HIV = GAY = BAD. Of course, it's not true based on world facts; but when did the people ever let facts get in their way. LOL

But we're not really all that special. Throughout history, people with new illnesses (especially the deadly ones) are outcast and shunned. Just a short time ago in the 70's, no one spoke the word "cancer". It was always "the big C", and you wouldn't dare mention it in polite company. It's only human nature (survival of the fitest) to be repeled by a terminal illness, and often the people afflicted with it are demonized.

These things come and go through our global society/culture. Right now, we're just in the storm of the latest epidemic going around. It sucks. But eventually as this disease is tamed down, people won't be as afraid.

(Perhaps that's why we see the difference in the attitudes of the newly poz vs. LTS. Depending on which end of the epidemic you enter, you either have seen it as an overwhelming growing problem, or as just another disease that medicine has already made manageable. Both sides are actually right, it just a matter of perception.)

Of course, now that society has declared this illness to be the current "special disease to be feared", we take the brunt of their ill will. Being members within the society, sometimes even we succumb to the thoughts of guilt that it was our fault we were infected.

So, no, this disease isn't different from myriads of others illnesses and it shouldn't be demonized. Maybe in another 10 yrs. it won't be, or maybe not.

From my own personal point of view as a gay man, I've seen our society as a whole (including us (meaning gay men) within it) change it's attitufe for the better. When I first started dating in the early 80's, many of the guys I met, just 5 yrs older than me, had been married. Why? Because most gays were in the closet back then, and a marriage was the perfect cover. For me, I got to live through a time where I never had to pretend I wasn't what I am. There'll always be some discrimination; but it's gotten so much better in the last 20 yrs.

Sorry for being so long-winded. As the good kid in a nice Baptist family, I've thought about this long and hard. I had to come to grips with being gay, why that didn't make me a sinner, and how to make my family understand that - even against everything society had taught them. Then I topped that off by ending up here, in the middle of an epidemic, being "demonized" all over again. So it's a struggle I've gone through before. It (being open about being gay) got better as time went by, and I'm sure that this (the stigma of being HIV poz) will also get better as time goes by.

-------------------
And then another disease will come along, and someone else will have to go through this too. :( It's just the way of the world.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline MOONLIGHT1114

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Re: is it "normal" to have HIV?
« Reply #4 on: August 27, 2007, 03:19:28 AM »
Mikie~

Whatcha doin' in the Girls' Room?  lol

~Cindy
HIV+ since '93, 1/12 - CD4 785 and undet.   WOO-HOO!!

Offline anniebc

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Re: is it "normal" to have HIV?
« Reply #5 on: August 27, 2007, 04:22:08 AM »
Mikie

You have been caught redhanded..now go to your room, no supper for you tonight young man... ;)...but it was a good post.

To Dragonette and the Ladies who replied...I'm sure Ann won't mind but something she wrote in one of her blogs about a year ago always stayed with me.

Quote The more we hide as positive people the more people will think we have something to hide and the more we feel ashamed of our status the more they will think we should feel ashamed unquote.

I refuse to hide or feel ashamed, like all of us here I have gone through changes since my diagnosis but my personality hasn't changed, I'm still the same women I was 5 years ago before my diagnosis...When I had cancer as a young women I didn't hide and I'm not going to hide now...I'm very open about my status.

Good post Dragonette, thanks

Hugs
Jan :-*
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline englishgirl

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Re: is it "normal" to have HIV?
« Reply #6 on: August 27, 2007, 06:28:23 AM »
this is a wonderful thread, thanks everyone

i think this is one of the reasons that i when diagnosed at 28 had less problems dealing with it than had i been 18 - i already had friends with other life-challenging experiences - autistic child, cancer, problems conceiving, divorce, death, disability, etc etc - so certainly didnt think that all in the garden was rosy. and maybe this is why i have found so much support from my lovely friends; they are sensible enough to view this as another of life's challenges. my friends never fall into the 'hiv lite' trap but they certainly dont treat me any differently because im poz than if i had a different condition. and that, i feel, is how it should be.

lots of love
xxxx
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Offline emeraldize

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Re: is it "normal" to have HIV?
« Reply #7 on: August 27, 2007, 07:12:32 AM »
The more we hide as positive people the more people will think we have something to hide and the more we feel ashamed of our status the more they will think we should feel ashamed

Thanks for putting Ann's quote in the thread soup.

I totally agree. Getting over starts with me.

Em

Offline leatherman

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Re: is it "normal" to have HIV?
« Reply #8 on: August 27, 2007, 09:28:47 AM »
Oops. Sorry ladies  ;D

I was hosting a bday party for one of my "ohio" nieces, and with a pool and backyard full of little pre-teen girls  ::), I was hiding inside at my computer. Totally out of my element (I have dogs not children LOL) out there at the pool, this looked like an interesting topic. I promise to pay more attention!  ;)

Bye Ladies!  :-*
mikie
(Leatherman quietly closes the door as he leaves so as to not disturb the ladies anymore)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Ann

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Re: is it "normal" to have HIV?
« Reply #9 on: August 27, 2007, 10:03:44 AM »
There's another blog-blurb you might like - "we hide because we have to, and we have to because we hide. It's a vicious cycle." Think about it!

Ann
(who is in a rush but will revisit this thread later)
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline momoftwo

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Re: is it "normal" to have HIV?
« Reply #10 on: August 27, 2007, 11:20:58 PM »
I talk about my diagnosis to anyone who asks. I am just tired of hearing "sorry" and "that is awful" when someone finds out.  By far I find that people think that we should be digging our graves since we will be dead soon or something. Forget about the part that I do not have AIDS but instead HIV. Those little letter make a huge difference.
There are times now where I do not even think about my diagnosis until someone brings it up to me.

Offline shotis

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Re: is it "normal" to have HIV?
« Reply #11 on: August 29, 2007, 11:46:27 AM »
you know what l have suffered from this fear for too long. I was diagnosed six years ago and l have never shared my diagnosis with my immediate family not even my mum. l want to be free to go my clinic without fear of seeing someone l know, l dont want people to know my business but l tell myself its just a disease. I guess the reason why we hide this disease, its the media, they perpetuate the stigma that comes with the disease and if the media had its way all poz people will be quarantined or burried alive........ l hate this....l just want to be free and live my life without fear..... why cant people understand our plight, what we've been through to get here!!!

Offline noahsark

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Re: is it "normal" to have HIV?
« Reply #12 on: August 29, 2007, 12:35:14 PM »
this is my first post.  diagnosed in 1990 during ob care.  told I'd be dead in 6 months and told to have an abortion. samantha was born poz and sero converted at 15 months.  Obviously I'm not dead.  About society's ignorant non acceptance of us, in this late day of aids, I just want to slap the piss out of them.  I've been public from the start-public speaking making videos,starting anonymous test sights,interviews, etc. I've moved a few times within ga., and this county doesn't even treat hiv/aids!  I've tried to start a support group here with no help from this health dep't., but the next county over gave my # out to people who wanted to talk to someone with.  Anyway, unless we put it in our conversations such as cancer is, and quit being ashamed or afraid of what some uninformed idiot's reaction might be, things won't change.  I even propose a sitcom with a family with a white pta mom having hiv.  I laugh at some of the stupid remedies I've tried.  The self medicating street drugs I justified using, and the shock treatments I've used when I've heard the ignorant conversations of strangers.  Anyway, I can be long winded about this very passionate topic, but I don't get along with pain real and right now it's winning.  Talk at y'all later.

Offline Dragonette

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Re: is it "normal" to have HIV?
« Reply #13 on: August 29, 2007, 01:36:54 PM »
Hi everyone & Noahs & Shotis, nice to meet you both, Noah it would be cool to read more about you when you feel ready

 I'm glad to be getting so many insightful responses from everyone. I'm just rolling the thoughts in my head. I have been brave initially but much less so recently about disclosure and living openly. Strange b/c I have had all good responses except my ex who freaked out and ran away (good riddance) and some friends who were remote anyhow. All the people who are really present in my life have not had a problem. Somehow though I am more afraid as time moves on and I wonder if it gets any easier. It would be great to be 100% out like Ann for example, and not to worry about the consequences b/c everyone knows. But I am not at that stage.

Still we can make the change within ourselves and that's what I was thinking of initially and maybe thats the first and most improtant step b/c ther will always be people who denounce us if they knew. Whether to out faces or whether behind our backs or whether just they don't know cos we anticipate it and don't tell them or are afraid to. No one needs to know our business (any business) but we can still feel good about ourselves.

And so many women have issues with feeling good about themselves for the silliest reasons, whether it's a bit of flab on their tummy or frizzy hair, serioiusly there are women who won't leave the house without ironing their hair and putting full makeup on. So we are taught to hide imperfection, and HIV is certainly one, but so what, no one is perfect (except little kids and babies - but they have no idea and are the last to feel that way).

Ongoing thoughts...
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline noahsark

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Re: is it "normal" to have HIV?
« Reply #14 on: August 29, 2007, 02:23:50 PM »
hey dragonette, I can talk forever- what all do you want to hear 'bout?

Offline BT65

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Re: is it "normal" to have HIV?
« Reply #15 on: August 29, 2007, 03:50:59 PM »
Hey Dragon:
  I agree with all the hype about how women are supposed to look.  Even though, the only place I'll go without make-up is down to the 7-11 if I need some cigarettes. :D  I'm scared people will see my wrinkles otherwise. 
  Good to meet some other new ladies.  Perhaps you all wouldn't mind introducing yourselves to us old hens. 
   I think there are still stereotypes of people with HIV, especially in small towns.  The first HIV doctor I saw had a paper he would fill out on each HIV patient.  On it he put the risk group.  He put me as a former IV drug use, just because he knew I was in recovery.  Which is not how I got it.  So there's stereotypes everywhere and I think that might be the reason people aren't as open as we would like to be.  There is also still a lack of education, which is really sad.  I have also done t.v. interviews, talking in universities etc.  But I realize that's not where everyone's at.  I wear an AIDS pin every day on my shirt.  Some people look at it, but most don't.  No one every asks me anything about it. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Paulette

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Re: is it "normal" to have HIV?
« Reply #16 on: September 12, 2007, 11:06:39 AM »
WOW! THIS IS A GOOD ONE. ALL I CAN SAY IS THAT I JUMP AT THE CHANCE TO EDUCATE THE IGGNORANT. AND YES I'VE BEEN ASKED SO MANY STUPID QUESTIONS LIKE BEING AN IV DRUG USER TO WERE YOU A HOOKER AND IT MAKES LAUGH BECAUSE MOST PEOPLE NEED TO GET OVER THE STIGMA ASSOCIATED WITH BEING HIV POSITIVE. SO BY SHARING MY PERSONAL EXSREINCE IF I CAN INFORM JUST ONE PERSON IS WORTH IT.
PAULETTE
I have HIV; it doesn't me;)

Offline lawless64

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Re: is it "normal" to have HIV?
« Reply #17 on: September 12, 2007, 05:16:54 PM »
I appreciate your words.  I'm newly diagnosed and I thought alot about the very things you mentioned. I decided that I have to continue to live my life regardless of the disease and not give in to it.  Being newly diagnosed, things haven't quite settled in yet but I know that I can't let the disease define me.  Very well said. I'm thankful to have found this site and such inspiring individuals

Offline panda

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Re: is it "normal" to have HIV?
« Reply #18 on: September 21, 2007, 07:48:38 AM »
Hi Dragonet, I left you a message at the topic "anyone who is pregnent.."

Offline Dragonette

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Re: is it "normal" to have HIV?
« Reply #19 on: September 22, 2007, 03:53:02 AM »
Hi Panda

I saw and wrote you a PM right away, check just under your user name on the left side of the screen

"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline Queen Tokelove

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Re: is it "normal" to have HIV?
« Reply #20 on: September 22, 2007, 01:41:37 PM »
I guess you can say I am one who hides it. Not because I am ashamed of it really but because everytime I have tried to be open about it, I got a negative response. Or as in my previous threads my family has viciously put me out there. I guess I have the mentality of why bother.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

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Offline ubotts

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Re: is it "normal" to have HIV?
« Reply #21 on: September 23, 2007, 01:06:24 PM »
I have come out to a few of my family because some of them are ignorant
and have pulled my nieces and nephews away from me.
The stigma hurts more than the disease..

I have told some friends and when I did, They were like OMG..iam so sorry, Theres no
cure for that is there..
 ( i dont want pity) I would like to be understood, just like the rest of us.

One of my friends has ALS..another has lung cancer,,and no one asks them how
they got there disease..

Its a shame we have to live like this...
It hurts me so much, that people will back away..and they still do..
So we haven't gotten that far in this respect, with this disease..
 :o

Live Love Laugh and dance like no ones watching.
Laughter is the best medicine, so try to have a laugh everyday..Even if your not feeling your best, think about something that was funny at one time in your life and work with it..   :o)

tendai

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Re: is it "normal" to have HIV?
« Reply #22 on: September 26, 2007, 08:28:36 AM »
i hate having HIV. i feel its closed doors for me.  i feel different.  i envy those who dont have it for being able to have babies with the men of their choice, can eat anything anytime. i dont feel normal. I  panic when i catch a cold, or get a pimple or a sore or my stomach aches. i try to be as normal as i possibly can but its so hard.   :'(

Offline Dragonette

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Re: is it "normal" to have HIV?
« Reply #23 on: September 26, 2007, 09:27:48 AM »
Since I wrote this I realized that those friends of mine who backed off when they heard of my diagnosis, at least some of them did it when they learned that I have a BF. To them, it's OK to be poz, as long as you don't "spread it", and they see any sexual relationship as spreading it. Just the fact that you are having sex makes them think of all sorts of things they don't want to think about. To them, if you are poz, you're done with that side of your life.

Tendai, I guess that in countries where HIV is more common, it should be more like, OK I am one out of five now, I am not this gory thing that people only whisper about. But that's how it SHOULD be, I don't know if that's how it is...

Yes the baby thing is difficult. It's harder, but then I don't live in a society that condones having babies "accidentaly". I am expected to take the necessary precuations at any age. Nor do I live in a society where it is acceptable to have a baby by someone who is not a long term committed partner (preferably, a husband). That is why I had an abortion at 24. Because of society, because of what they would say.

I heard this joke on TV, "the best time to have a baby is when you are teenaged and black". It is racist, but I do see the teenage mothers around here (not necessarily black), they are always from a poor background, and they don't give a fuck, they just go on and have those kids. Same for the African woman, many of the refugees have children by several fathers, even though they don't have a job or even a legal status. And you know what, it is absoutley their right (some people might criticize that they have children without the means to take care of them, but I say this is an assertion of life when society's taking life from you by not giving you basic rights and dragging your ass through the legal/immigration system for years and years. You have children DESPITE of that, and DESPITE of HIV).

Sometimes, the things that take power away from us, push as so much further that they give the power back. Tomorrow, I am going to see the doctor, with my boyfriend, and we will discuss having children (though by no means this means that we will work on it yet). Before my diagnosis, I never called a guy to ask him out, I never initiated talks about kids and marrriage when I was in a longterm relationship, I always hang back and did the right thing, the medicore thing, the lukewarm mainstream thing (except in my teens when I lived on the edge). Hence the abortion. You think I would have an abortion if I got accidentaly pregnant now as I did then (with contraception that was pulled off the shleves because it was found that it doesn't work well in over 30 degrees' heat), even if everyone pointed and laughed and gossiped at me? Hell no! I would go ahead and do my thing.

Another thing is, I have no social rights here (maternity leave, child benefits, social security etc), basically, my work does not expect me to get pregnant. Perhaps they think that because I don't have the benefits and am not even granted time off for it, I will not do it. Yes it will make things much more difficult, but it will only reinforce the unfairness of the situation (employing foreigners in the same positions as local citizens at lower pay and without the basic rights) if I let that stop me... none of that will stop me, the only thing that might get in the way is my boyfriend  ;D

I know that I am saying this from the safety of Europe, rights or no rights. I know, that things in Africa are very different. Please don't think that I don't worry about you and consider all you undergo - what of it that I know of/can imagine beacsue I am sure there are many aspects I can't even begin to... I am just telling my personal perspective here. I think in this HIV journey each story is completely unique. seriously we can learn from each other but never quite find someone just like us.

You don't need to try to be normal but you can do your thing, despite. Because you need it, you want it. I am not saying that anything we want comes to us but if I lived as mainstream society imagines I would not be where I am now; today I taught little kids at a school, voluntarily, and it was a posh school and when all the parents came round I thought "how many of them would completely freak out if they knew?", and then I thought "you do what it right and what you want to do, because life is too short to educate everybody". I still remember when a poz teacher outed himself in Israel and he was sacked, and how he had to go public and battle it and how people judged and menaced. I can't remember if he won or not. Now I want to educate people one day, but you know if you do the "school rounds" educating you do it away from your area so that you won't have to suffer immediate consequences, so you can educate without putting yourself in harm's way.

Ubotts, I don't know which is worse, ALS or cancer, both are horrific, I guess ALS is even worse cos it kills for sure in the worst way. It's ridiculous that HIV is judged, but give me HIV anytime, anyday over these two and pletyof other diseases... although initially I wished I had cancer. Family? some of mine are ignorant as well. I avoid telling them. I only tell people that I trust, or try to anyway... some of my family are judgmental, snobbish and kind of primitive in their views (sorry but they are, though they have good sides as well), I always knew this and never shared private things with them, why would I share HIV? they are in complete denail over the son who is gay, he is the "unmentionable", why should I come out as poz to them then when I know how critical they are, of everything, and that they look down on anyone who is poor or from a different background/religion (rich white Christian business types may be excused, but my cousin married a Latin American and they really treat him funny, even though he is such a great guy).

But some people are surprising. I have a friend who works for organ donations and I considered telling her but I think she will be supercritical, while others who might know very little can be initially put off and then accepting. People can surprise. I think the best test is to think, how would they react if I told them that I am a lesbian/a single mom/I have a lover from another race/that I am on psych meds/a recovering addict, or any other secret people consider problematic (like dating a guy half your age, whatever). If these people would not react favoribly - and in that I don't mean in a supportive or approving way necessarily, just accepting - to any type of secret like that, why should they react differently to HIV? And then we have to think if we give a fuck or not or as Queen put it more politely, are we bothered.

I know... there are days and there are days. Some days I feel unstoppable, and some days I feel wretched. That's pretty normal isn't it?  ;)



« Last Edit: September 26, 2007, 09:41:54 AM by Dragonette »
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline MOONLIGHT1114

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Re: is it "normal" to have HIV?
« Reply #24 on: September 26, 2007, 10:06:12 AM »
I hate to say this, but if its not "normal" now to have HIV, I think that one day soon it may be.  Just like the Big "C," I feel society will move past this stigma eventually.  Also, and this is sad, but so many young people see HIV as not a big a deal as it used to be, i.e. "the one pill a day virus", meaning they feel they can be pos and live with it, and it might even be OK to get it, and its almost expected to get it, esp in the gay community, from what I've read.  This is awful, I know, and the mindset is really skewed now, if you ask me.

Since joining this site in late June, I feel so much more empowered to bring my situation up with new people in my life.  I'm not as scared as I used to be, but I am certainly emotional.  Is it guilt?  Is it loneliness from being widowed so young? The biggest hurdle for me is the flow of these emotions, maybe its shame and self-doubt, because I feel I've made a terrible mistake for myself that could have been avoided, that maybe I haven't forgiven myself for.  The emotions flow because I was already diabetic when I got HIV, and now there is a double-whammy to my system (more than double, really, as Drag said, we all have things we are dealing with healthwise...).  I think alot of it may be the guilt, this I put on myself, thinking that my parents must be so distraught and worried about my health.  Maybe its just the fatigue and the toxic meds I'm on that just cause me anxiety, and cause me to not know the difference, but in my doctor's eyes, I am really OK. 

Everything is so upside-down when we try to look at ourselves.  I wish I had a clearer mind, so that I could look at my situation objectively.  Or am I being objective already?  Somedays, yes, I feel like its normal to have HIV, and other days I wonder if life would really be any different without my having it?  I guess I'll never really know, but I live pretty "normally" with this virus, just more tired than I'd care to be.  But like I said, maybe I would be like that anyway.
HIV+ since '93, 1/12 - CD4 785 and undet.   WOO-HOO!!

Offline Dragonette

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Re: is it "normal" to have HIV?
« Reply #25 on: September 26, 2007, 10:16:41 AM »
I've made a terrible mistake for myself that could have been avoided, that maybe I haven't forgiven myself for

from what you shared here, it couldn't really have been avoided. most people who are lied to fall for it, and most people who lie get away with it, because they are good at it. I am just wondering if you feel that your diabetes is the result of a similar mistake. Or your husband were hiding something else (a lover?) if you would still be angry with yourself for not finding out.

I know HIV is seen as preventable and I know all sexually active people should be tested but many of the women here who were repeatednly and systematically lied to in an LTR, I don't know what they could have done to protect themselves. It's one thing if you go into a sexual relationship gambling on your partner's status and another if he knowingly hides his status from you.

I am not saying that people who took higher risks should feel guilty b/c I think people do take risks and only when something happens we blame ourselves so what's the point of that, but specifically in the cases of many women here it is the men I balme, not for having HIV or even unprotected sex but for lying about having it and hurting those they love that trust them.

"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline Dragonette

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Re: is it "normal" to have HIV?
« Reply #26 on: September 26, 2007, 10:29:30 AM »
I forgot to add, yesterday I was also overwhelmed with guilt b/c I felt that I made my parents worry about my health (this when I don't even share all details with them). But you know what, we worry about people we love, that's the bundle. Now I have to worry about all the people across the ocean I've never even met  ;D.

One more thing about the men, what they did is criminal, the fact that they were not prosecuted doesn't make it less criminal, just like an unreported rape is no less than a crime. Maybe I am more of a radical b/c I was never involved in something like this and did not have loving feelings to someone who infected me, and I am not saying that these men couldn't be wonderful people asides from that nor that it cannot under certain circumstances be forgiven, but it is still a crime...
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

tendai

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Re: is it "normal" to have HIV?
« Reply #27 on: September 27, 2007, 05:17:25 AM »
would somebody please wipe out all these men off the face of the earth?  its selfish and evil how they knowingly infect women who trust them.
i'm going through what i think is an HIV rejection. disclosed to this guy i really liked and ever since then i've only seen him twice. doesnt call or reply messages and i'm kicking myself for telling him thinking 'he wouldnt be acting like this if i hadnt told him'. I give up. the whole marriage and babies thing. never gonna happen for me. bcoz of this stupid virus.  They say everything happens for a reason but i dont see how this virus is going to benefit me in any way. (I really hope i'm pre-menstrual coz i feel so lousy right now i could cry.) :(
this thing isnt normal because its and STD mainly and it kills and its so easily spread. like leprosy. thats how i feel sometimes. like a leper without the sores. :'(

Drag: Good luck with the doctors appt  i hope it works out
« Last Edit: September 27, 2007, 05:31:33 AM by tendai »

Offline BT65

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Re: is it "normal" to have HIV?
« Reply #28 on: September 27, 2007, 06:24:47 AM »
Cin- I can relate to a lot of what you were talking about.  I was widowed when I was 24, and my husband was the one who infected me also.  I turned diabetic about eight years ago when I was in a coma.  The feeding they were giving me through a tube had an extremely large amount of sugar in it and it caused my pancreas to fail.  So, I feel like I'm double-whammied also.  But, they are things that can be dealt with.  I'm so thankful that they've come up with more effective treatments for the HIV.  When I tested pos, in '89, there was only like doctors mega-dosing people with AZT.  I was one of those people, and I ended up having to go to the hospital to get a transfusion because my hemoglobin dropped to "2" because of all the AZT.  Thank God there are more choices today than there were and that doctors know a little more about dosing.  You just gotta hang in there. 

Tendai, I wouldn't rule out marriage and having children yet.  These things are still possible with HIV.  Just don't project.  If you take things one day at a time, pretty soon one day turns into another day, and things change. 

Drag, I've had an abortion also.  It can leave you with a terrible feeling of guilt; at least it did me. It took me awhile and some pretty intense counseling to deal with that grief.  I had to have the two-day abortion because I was like five months pregnant.  It was such a horrible experience.  I hope you're doing alright with that. 

Some people will back away, but what I've found is that most will not.  Especially if they're educated about HIV.  People who are so ignorant that they will back off, I'd rather not have around anyway.  I find those people very judgemental and I absolutely cannot stand to be around judgemental people anyway. 

It sounds like we could all use a vacation or something.  I wish I had as much money as I wanted and could just send us all to an island for awhile so we could regroup.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline tsw923

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Re: is it "normal" to have HIV?
« Reply #29 on: October 02, 2007, 10:03:59 PM »
Ladies,

I have been diagnosed a little over a year ago and have been on meds for a year.  However, my doctor told me that due to the very low CD4 counts and other 'indicators' I had probably had HIV for 10 years or so.  I agree with all of you, I hate hiding my illness.  But my rationalizations are that I feel guilty because I could have prevented it; I don't want to embarrass my parents; I don't want to have issues at work, etc.  But as more time passes, I feel like I want to be more open.  I look at my cousins who about 22 and think that I don't want them to be ignorant of what could happen like I was.    But I haven't taken that step yet because I'm still trying to come to grips with things myself.  But, I can see the day coming when I just tell folks and let the chips fall where they may....

Ty
Help find a cure for leukemia, lymphoma, and other blood-related cancers by sponsoring me as I walk a 1/2 marathon as a part of the Maryland chapter of Team in Training.  To find out more and to donate, please click on the following site:  http://www.active.com/donate/tntmd/tswtntmd

Offline BT65

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Re: is it "normal" to have HIV?
« Reply #30 on: October 03, 2007, 06:19:27 AM »
Ty, the day will come when you tell the people you're supposed to tell.  It will happen, don't worry about that.  I know the feeling about looking at your younger cousins and thinking about what could happen to them.  I do the same thing with my grandchildren.  And with my daughter.  I think most peoples' opinions of HIV have changed from "OMG I'm gonna die!" to "Oh well, if I get this, I just take meds."  People don't realize that people still do die from AIDS, just not at the alarming rate they used to.  I haven't been to a funeral for about a year, whereas before, a week wouldn't go by where I wasn't at a funeral.  Times have changed and, unfortunately, so has a lot of peoples' attitudes about this disease.  If only we could do something magical to make it all o.k.  But until then, all we can do is take care of our own little corner of the world.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

tendai

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Re: is it "normal" to have HIV?
« Reply #31 on: October 03, 2007, 08:59:10 AM »
Hie Ty,
You can still just educate them on HIV without having to disclose your status i think.  me i;m always haranguing my 17 year old  brother and my 15y-o cousin in high school about it every chance i get. even the 13year old girl  who hides with embarrassment when u mention boys. i dont tell them i have it or anything, i just tell them to be extra careful if they decide to start having sex.  The girl i threaten her with pregnancy and all sorts of diseases. u never know-  it my help. ;)

Offline tsw923

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Re: is it "normal" to have HIV?
« Reply #32 on: October 04, 2007, 12:34:23 AM »
Betty --

I think for most of my family they still have the 'you're going to die' right away reaction.  Everyone still sees it as either a 'gay' disease or something you get because you are 'fast'.   :-\  But you are right, most folks just ignore it of just assume that with meds you'll 'be ok'.  I wish we could just get folks to acknowledge that it is an epidemic and deal with trying to prevent it... sigh...

Tendai -- you are definitely right about what you say.  I guess I can have the conversation without spilling the beans.  However I do have at least 1 cousin who would put it together and probably ask me outright.  And I'm not a good liar.... ::)  But maybe that will help me feel like I'm doing something for now.

Thanks ladies,

Ty
Help find a cure for leukemia, lymphoma, and other blood-related cancers by sponsoring me as I walk a 1/2 marathon as a part of the Maryland chapter of Team in Training.  To find out more and to donate, please click on the following site:  http://www.active.com/donate/tntmd/tswtntmd

Offline patti ann

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Re: is it "normal" to have HIV?
« Reply #33 on: October 06, 2007, 12:28:34 AM »
I see what you mean so clearly and agree so much. I am open about my status just to help with he stigma that is still lingering so badly.I hate seeing anyone ashamed or embarrassed about being Poz. We are no different than others, just have an extra health issue to deal with. Take care and make it a good day!
Patti

Offline patti ann

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Re: is it "normal" to have HIV?
« Reply #34 on: October 06, 2007, 12:34:07 AM »
How do you all put your lab work numbers thru the years in your posts? Is it your signiture......new here...help.  :)

Offline Dragonette

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Re: is it "normal" to have HIV?
« Reply #35 on: October 07, 2007, 05:10:59 AM »
Patti Ann

It's great that you can be so open about it. I would love to know more on how that actually happened. I am happy for you that you have such peace with the disease and yourself

Ty
I am like you, diagnosed late... my extended family don't know either and I doubt I will tell them.

I am trying to come to terms with it. This forum helps a lot. The others too but here is where I come for my "therapy"



"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

 


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