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HIV Life >> Living With HIV

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BIGTIMEGAL9
Newbie

Reged: 06/02/13
Posts: 2
How do we deal with the stigma or disgrace around us today?
      #272323 - 06/02/13 07:28 PM

I would like to know how do we deal with the disgrace or on the other hand
the stigma in this world when nobody don`t want to come forward about their
HIV or AIDS problem when they know they need to talk to someone about it or tell someone about it. The only reason I`am asking about this is because
I live in Ocala,Florida and the only thing that I hear about someone or know someone who has HIV or AIDS is when they has died from it and so this really upsets me highly because I myself is HIV+ and has been about three years for me and I just wanted to know how do you deal with the disgrace or stigmas around you today.

Edited by BIGTIMEGAL9 (06/02/13 07:30 PM)

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kicker
Moderator

Reged: 10/25/10
Posts: 1131
Loc: GA, USA
Re: How do we deal with the stigma or disgrace around us today? new
      #272324 - 06/02/13 08:32 PM

That is an excellent question which I am sure many will have different views on. I personally would ask myself why I would call it a disgrace, first and foremost. I would also ask myself what stigmas I have about it. Very few positive individuals will admit to it, but we each had our ideas of an image of who gets HIV, how they got it, and what they are like, before ever dealing with it ourselves. For some it's very real and sharp image. When a person becomes infected they see themselves as that image that they had before of that imaginary infected person.

This causes them to take on that persona in very odd ways. Say for instance your idea of HIV before you became infected was that you could get it from kissing. After becoming infected you may think that if you kiss someone that you will give it to them at first, then it becomes something like you don't want to be touched or touch anyone. Another example I have seen quite often is the person may feel that people with HIV are drug and sex crazed. When that person becomes infected they then believe that they are a druggie and a "whore". Which causes them to not care and do those things, because everyone thinks they are that anyway why not right? Another really good example is if the person thinks that they could never love someone with HIV then they may think no one can love them.

This in turn causes us to portray those things that stigma likes to harp on. We outwardly show our own stigmas when we become positive, which whether we tell others our status or not shows through, so when they do find out they then see what we are doing and assume it's how we got infected, so they form opinions and the cycle starts all over again.

The best way to change stigma is to first look at yourself. Are you comfortable with yourself? Have you made peace with being positive? If you have then talking to others about your status, no matter what their reaction will be like telling them you stubbed your toe. If they get hostile, you will know it's their fears and misconceptions, that it has nothing to do with you and you shouldn't take it personal.

The best support one can ever have is themselves. If you don't feel good about yourself, how on earth are you ever going to get someone else to feel good about you? If you being positive are uncomfortable with it then how do you expect those around you to be comfortable with it? It all starts with you.

Identify what you thought about HIV before you became positive. Then tell yourself you are none of those things. Believe it and you will find that stigma just makes you shake your head and laugh at the ignorance. It will empower you to stand up for yourself and be assertive. Above all you will be happier no matter what other people say or do. It's all up to you.

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BIGTIMEGAL9
Newbie

Reged: 06/02/13
Posts: 2
Re: How do we deal with the stigma or disgrace around us today? new
      #272330 - 06/02/13 09:29 PM

Well I`ve accepted begin positive for the rest of my life, but I still can`t understand how some people can live knowing that they have this disease and don`t wanted to talk about it to anyone or try to deal with it all alone without telling anyone.I call that torture to themselves.

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kicker
Moderator

Reged: 10/25/10
Posts: 1131
Loc: GA, USA
Re: How do we deal with the stigma or disgrace around us today? new
      #272333 - 06/02/13 09:56 PM

You can't change other people you can only open the door and hope they follow. You are welcome to post here and there are many here that like to talk to others. So don't worry about them.

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iam1
Fanatic

Reged: 06/17/09
Posts: 165
Loc: Georgia
Re: How do we deal with the stigma or disgrace around us today? new
      #272335 - 06/02/13 11:50 PM

Kicker has it right - you have to first be comfortable with yourself.

I've been positive over 20 years. Longer than some people I test have been alive. I AM comfortable with the fact that I am positive. And, I'm comfortable with the fact that everyone is isn't going to be.

One of the things we ALL need to work on is education. Noone ever died from brain overload. Unfortunately, most of our information comes through the mainstream press. And, they're the only people who are more behind on this disease than the government. Schools might mention the fact that HIV exists, but many of our public schools aren't even allowed to discuss proper condom usage. So, people watch television and get "educated". People go to the internet and read what they want to read (because it it's on the internet it MUST be true...) and remain ignorant. If everybody came to this website for information the world revolving around HIV/AIDS would be much advanced! So, people learn very little factual information about HIV and still believe the old "information" that if you get this disease you're going to die. Ignore the fact that everyone dies. It's just a matter of time.

With education comes freedom. The more a person is educated about HIV the more freedom they can have from obsessing over it whether or not they are positive.

Do I think about the fact that I'm HIV+? Sorry. Haven;t got time for that. I have a life I want to live, and besides the minute in the morning to take my meds it's generally a non-event in my daily life.

Because I am so comfortable with being HIV+ other people can't get to me. I discuss it openly with my doctors. They need to know to prescribe meds and possibly alter treatments. The nurses are in the room. I don't try to hide it from them, either. I see them twice a week and have been for nearly 3 years. (I have health issues that are NOT HIV related!)

If someone were to make a rude remark I'm fast enough to make a smart ass comeback. I don't believe in letting anyone get away with stupidity.

Many people who are HIV+ never get to this point in their lives. There is absolutely nothing wrong with this. HIV is a person matter. Each person has to handle it the best way they can for themselves.

You don't see people going down the street with big, red balloons announcing to the world that they have diabetes, high blood pressure, or gout. Each of those is a personal medical condition. Most of the world couldn't give a damn about anybody else's personal problems. They each have their own life to live.

While there will always be those who think it is their obligation to pass judgement on others most of the people either don't care or are supportive of people who are HIV+. Unfortunately, they are no better identified walking down the street than anybody else.

What can you do about it? Get involved in education. This means you'll have to learn first. Educate people about HIV. Work through a local HIV clinic or support group. Let people know that those of us with this disease are no different then they are. Be the face in the crowd that people can and do turn to when the topic of HIV comes up. Be the face in the crowd that makes a positive (no pun intended) difference.

As for only finding out people are HIV positive after they've died - get involved in HIV related activities. There should be a local support group. Get involved and meet others who are also HIV+. Get to know them before they die. They're generally much better conversationalists.

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anotherday
Moderator

Reged: 05/15/13
Posts: 459
Loc: Alberta, Canada
Re: How do we deal with the stigma or disgrace around us today? new
      #272339 - 06/03/13 02:02 AM

It's not a stigma or disgrace for me, I just accepted it. I don't go running around telling people how much money I make, I don't go running around telling people I had toast and coffee for breakfast ... should be the same for HIV. If you are comfortable with it in your life, great. If you need to talk to someone about it, find someone who you feel is comfortable with talking to you about it. You can actually just start out as a general conversation instead of just blurting it out to them that you have it. Find out their views and opinions, if it doesn't feel comfortable for you, don't tell them.
We all hold some kind of secrets in our lives, a gay or lesbian person can hold that back for years, but once it's out, it's not a big deal. Those that can't handle the news are just not "modern" enough. If loved ones shun you because of that, it's their loss, again it's one of those situations that you are you, they know you before HIV, your still the same person with HIV, just that you now have something special that belongs all to you!
I wouldn't call it a torture, if I was a diabetic, I wouldn't go yapping about that to everyone. If someone really needs to talk about it to someone, if it is affecting them that much doctors or doctor refered therapists, there all there, the general public ... they don't need to know unless you feel you need to tell them!!!

--------------------
anotherday ... in paradise!
daily ponder ... be the reason someone smiles today!

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anotherday
Moderator

Reged: 05/15/13
Posts: 459
Loc: Alberta, Canada
Re: How do we deal with the stigma or disgrace around us today? new
      #272342 - 06/03/13 02:25 AM

First of all why is it a "disgrace" sounds kinda harsh, "stigma" well everything has a stigma attached to it but that's just society always telling us what is the "normal" verses who we are as individuals.
HIV/AIDS is only a "problem" if we make it a problem, I don't find mine a problem, I go see my doctors, take my pills, be careful what I do and I still put my pants on one leg at a time, go to work, get my same drive thru coffee every morning, watch my fav tv shows. When you have HIV you just have to make it part of who you are. If people around you need to know about it, tell them, otherwise who needs to know.
There is only disgrace and stigma around it if you can't deal with it on your own, if your uncomfortable with it then yes, others around you will be uncomfortable, if you find it's just part of what makes you the individual you are, then not an issue. Doctors and therapists are there to talk the details about it with you, to keep you on the healthy track ... the rest of the world you just need to live in, and enjoy!

--------------------
anotherday ... in paradise!
daily ponder ... be the reason someone smiles today!

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notinterested
All Star

Reged: 09/07/11
Posts: 127
Re: How do we deal with the stigma or disgrace around us today? new
      #272346 - 06/03/13 12:28 PM

Great posts and I completely agree with you. Initially, I felt like I now have a secret I have to keep but I now realize that had nothing to do with HIV but really had to do with me. I've always been one to tell my life story to everyone and now realize I don't have to do that. It's taken some time but after talking with my doctor and thinking about it, having HIV is not really a big deal. I have to take my medication and see him twice a year, which I actually like, but other than that, I'm the same person I was before HIV. Having HIV is definitely NOT a disgrace unless you make it a disgrace. Who would want to live their life thinking they are a disgrace? Not me.

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riverprincessModerator
Moderator

Reged: 12/25/11
Posts: 1764
Loc: Jersey Shore
Re: How do we deal with the stigma or disgrace around us today? new
      #272347 - 06/03/13 02:25 PM

There is a difference between not needing to talk about it and not talking about it out of various fears.For example I don't find the need to tell everyperson that I cross paths with that I am Hiv positive.. There is no reason , I'm not going to have sex with that person nor will I be sharing needles. I have accepted this so called illness many many years ago as just something that I need to take a medication for. I am actually a very healthy individual. No alergies , like many suffer with , no diabeties , which many had to take insulin for, my blood pressure is great, my heart is fabulous. I do not see myself as a person with health issues. It's a matter of how one wants to see themself. I had a dear friend that just couldn't accept her own skin , as she would put it, and her lack of acceptance just affected her health more and more. The only problem I got is that I'm getting older, and thankfully so . And there is the other side of the coin for me also. I don't expose my status because of my line of work either. So there is where my only fear lies. I've been a health professional for going on 25 years . and I see no reason to jepordize it by having a need to tell. No one is at risk except myself wit dealing with the public. And that too I have had to come to a different type of terms. If for some reason the topic does come up I find that as a opportunity to educate . HOw you persieve things is how others will . And remember it's always a personal choice. I hope this long answer has helped you .

--------------------
Look up to the Heavens for the answers to Lifes questions .

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lilfshrmn
Member

Reged: 03/07/13
Posts: 49
Loc: SE US
Re: How do we deal with the stigma or disgrace around us today? new
      #272351 - 06/03/13 04:30 PM

I have been met with compassion and graced by telling loved ones and close friends. Only stigma I've met so far was from, believe it or not, Church. I needed affrmation of my salvation, counseling and support for my family. Disclosed to pastor and associate. Met so far with silence. No call, no card, no contact. I know my prayers are heard and God loves me so I'm looking for another church.

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riverprincessModerator
Moderator

Reged: 12/25/11
Posts: 1764
Loc: Jersey Shore
Re: How do we deal with the stigma or disgrace around us today? new
      #272354 - 06/03/13 07:41 PM

I am sooo sorry that your church reacted in the way that they did. Hubby and I were the first pos people in our church . We were brought up at the board meeting and they decided that the only thing to do was to accept us with the open arms of Christs love. I know that you will find the right church . And do pray for the one that you are leaving behind.

--------------------
Look up to the Heavens for the answers to Lifes questions .

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Daddy_Bearby
Member

Reged: 07/29/09
Posts: 27
Loc: Alabama
Re: How do we deal with the stigma or disgrace around us today? new
      #272375 - 06/04/13 10:48 PM

First thing I think is to inform them when they make degratory comments about some one having died due to aids or complications they might need to be rethinking about their own status since many people have made comment's here in the belt buckle of the bible ( ok Alabama ) when some one dies of aids or complications thereof " oh they deserved what they got for being queer " .
I myseld outed myself enmasse to my leather breathern in 2003 and I felt the stigma lifted from my having tried to hide the fact that I am poz ( used much the very same words when I told the banquet room of 200+ ) .
Now whereas I bet most have forgotten me having made such a "bold move" ( words of the then club president ) I still inform each person that say's lets do the naughty or such a similar verbage for sex and if they doubt what i say because i am healthy I simply pull out the military style dog tag my husband had made for me on our 17th anniversary that simply states " HIV POZ " as proof of my status I mean who else other than a poz person would walk around with such proof to show those in doubt .
Now I know there are many out in the world and more than a few I know personaly that have taken an even bolder move and gotten tats of the bio hazard symbol to announce their poz status most in the world are not aware what such an adornment of one's body means whereas my symbol spreaks for it's self

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anotherday
Moderator

Reged: 05/15/13
Posts: 459
Loc: Alberta, Canada
Re: How do we deal with the stigma or disgrace around us today? new
      #272381 - 06/05/13 12:16 AM

It is always so challenging when your belief in religion and God are always put to the test, by the place you feel should be the house of salvation. The "ultimate" place of assurance and peace.
I was happily going to church quite a few years ago now, before HIV but during my big coming out as a gay man, I went about my praying and attending every Sunday and dropping what I could financially into the collection tray ... then came one Sunday, when the preacher was up before everyone and he started bashing same sex everything. I had to stop for a second and just really tune in to what he was saying to confirm what I was hearing. Proclaiming it to be such a sin and how they are at the lowest level of society and in God's eyes absolutely not right.
Well after not showing up for several Sundays, I was later informed that that particular Sunday was a lead up sermon to unity and understanding of people, ok maybe I get it, but if I were there for the first time and heard that particular "bashing" sermon, would I be really ready to go back the next week. Is HIV God's punishment to gay men, can't be because it's not only gay men who have it. Is God passing judgement on everyone lilke the churches pass judgement.
From what little I get from church, God is ever forgiving, creator of all mankind in His own image. The ultimate friend to turn to when you have reached no other alternative. If this is God, why do people who "represent" Him, always make it so hard to contact Him.
Since my church encounters it has been my belief that my God is all around me, I don't need a church, God is nature, air we breath, warmth of the sun. In believing and knowing that, it helps me enjoy everyday and my life with HIV and how to weave it into my life. If God gave me this as a test, I am ready for the challenge, maybe he just gave me this to open my eyes, whatever His plan, has worked wonders for me! My non-belief of God maybe isn't that at all and that is more focused on my non-belief of the church, created by mankind!

--------------------
anotherday ... in paradise!
daily ponder ... be the reason someone smiles today!

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jimwhoski
Newbie

Reged: 05/25/13
Posts: 4
Re: How do we deal with the stigma or disgrace around us today? new
      #272393 - 06/05/13 10:48 AM

Great question! I've been positive since early 80's from being an IDU who shared needles w/ a friend who died from AIDS/pc pneumonia in '86. We can be hard on ourselves, our own worst enemies. I was in denial for years, even after coming down and being hospitalized w/ AIDS myself in 2000 when I finally started treatment.

If we allow what others think just causes unnecessary stress on our part and holds us back from living our lives as we'd like to. I recently have gone public on facebook and dating sites, other than those for people living w/std's, about my status.

I used to go out of town for my meds, doctors, etc... in fear that someone I knew would find out. I can't force knowledge on others but I can write and share about it besides coming out about it as they would say in the gay community. And no I'm not gay but I'm accepting of those who are.

I consider my viruses, I'm co-infected living w/ hepatits C as well, a blessing. Now that I'm accepting of them I'm able to move forward with my life being the best person I can be. I can't worry about what others may think or say, the stress will only get me sick and eventually kill me.

I've always been against bullying and negative gossip. Being around people who are ignorant/negative would only become my downfall in life. Be a leader and not a follower. Have faith that it's ok being yourself as you are. We can't allow ourselves to stop trusting others. That would like being prisoners of terrorist and allowing them to take control of our lives and well being. I'm not saying we should go around blurting our status to every Tom, Dick & Harry, lol, but take that leap to share when you think it's good for you. The more you talk about it with others the easier it gets to talk about it period.

I must say that being online and seeing a psychiatrist has brought me the confidence needed to take that weight of my shoulders. I was amazed at the support I got also have helped many to better understand about hiv. Since being more open about my status I've giving others the confidence to share about themselves, no matter what the health issue they may be dealing with.

Good luck and God bless

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