|
|
Something to mull over...
#236747 - 02/19/08 11:01 AM
|
Reply
|
Quote
|
|
|
What factors go into someone being so afraid of disclosure that they can’t even disclose to a group whose purpose is to make the lives of people with HIV better? How can someone work side by side with this group...attempt to lead them…..yet not disclose?
I’m not sure how I feel about this.
I’m angry. Angry at the fact that the stigma is still so strong that someone would feel unable to disclose to a group which has but one purpose; to help people Living with HIV.
I’m angry, because I feel somewhat betrayed. I have put myself out there. Disclosing to groups. Talking about what it’s like to Live with HIV. Doing what I can to dispel myths about HIV and the people that live with this disease. It’s not easy to stand in front of a bunch of strangers and say “I have HIV”. It’s not comfortable to find one of these strangers sitting next to you in a restaurant and knowing they recognize you as they lean over to their dinner companion.
I do find it slightly hypocritical. I certainly do believe that people should disclose as they see fit, but at the same time, how can a person effectively fill a position of leadership in this field and not, in good conscience disclose? It feels almost like a betrayal of what we try to do. What right do they have to ask what they themselves refuse to do?
I am saddened. Saddened by the fact that any person still has to feel the need to hide. Sadden by knowing the personal toll it takes to hide such a secret. I would never wish the burden of carrying this secret on anyone. Sadden because I know that one of the biggest reasons we choose not to disclose is our own personal feelings about ourselves and the fear. People disclose when they feel good about themselves and know in their own hearts that they are good and important.
Just seems that no matter how much we seem to gain, we’re never going to win acceptance if we are our own worst enemy.
Thoughts? Comments?
Post Extras:
|
|
Pats
|
|
Member
|
|
|
|
|
Reged: 02/19/08
|
|
Posts: 12
|
|
Loc: Derby UK
|
|
|
Esmarelda,
Why is lack of disclosure akin to hiding due to fear?
Question: Should a medical condition define the person that I am?
I do not think so. I have been HIV+ for 5 years now, it has not defined me nor will it. I am pround to be me. Bob. Yep me.
Whether people know my HIV status or not does not and will not prevent me being active or doing good in any area of public ignorance.
I sense anger in your writing. Please do not be. Anger does nothing but weaken an individual and distract one from the positive things that need to be done.
Let us be strong as a community for the people that we are, not for our infection. Let us be part of the human struggle against this virus. Then when we have won this battle let us turn our drive to other issues.
Just as people do not like "Bible Thumpers" they do not like "Condition thumpers" either.
We are human first and foremost and must act in that serenity.
Bob
Post Extras:
|
|
|
|
I work side by side with wonderful people at my job. I do not disclose to them because I can't see the purpose. They also don't know about my former breast cancer. Its not the condition, its a choice I made because it isn't important that they know my health status. It serves no purpose for me to disclose anything; its my job; not a group. I do disclose freely to this site, to POZIAM, to the fun group I just went to a hetero POZ party with. I don't disclose not because of judgement, but because I can't see the benefit of spreading the joy of my HIV, arthritis, spine surgery, or cancer surgery. I'm personally tired of talking about it and I don't want to belabor the whole thing. I choose to live my life as a worthy person with high self esteem despite my medical history. Yes, it sucks that we have to think before we disclose to someone..but we also need to think..whats the point? what are we trying to gain? Is anything in our medical history really anyone's business or need to know? I'm sorry you are upset or feel bad, but I am glad you are here talking with us.
Take care,
Bernie
Post Extras:
|
|
|
|
Why is a lack of disclosure akin to fear? Because the person disclosing to me told me they hadn't done so before because of fear. Do you purpose to second guess this persons innermost thoughts?
Fear of disclosure is very real. In a recent survey we put together for our clients we found it ranked right below transportation issues for barriers to accessing services.
We tried a support group that no one came to. When asked, the consensus was because of the fear they might be seen entering the meeting. These people's fears are real and must be respected.
My issue on the first post was only with the one person that while asking others to disclose their status, would not do that themselves. Again. Don't ask, what you, yourself are not willing to give.
I'm glad you don't feel the stigma that has been attached to this disease. However in rural areas, this feel good about being HIV hasn't really made an appearance. And won't until more people start living openly. It's still whispered about. It's not easy for these people and it can't be wiped away with platitudes.
"Question: Should a medical condition define the person that I am? "
Of course HIV does not define my complete existence, but yes, it is part of what defines me. To deny the impact HIV has on each and every one of us in our day to day lives, is to deny a part of ourselves. You can not fight nor defeat what you choose to deny.
It's good Pats, that you feel so easy in living with HIV. I've seen that trend in those of you that haven't live with this as long. It's a good sign that we are slowing changing people's view of people that live with this disease.
You can thank those that have gone before you....
Those that have disclosed uneasily and with doubt, but with courage. Those that have fought for the rights we now enjoy. This isn't a battle that is done.
You said, " Let us be strong as a community for the people that we are, not for our infection.
Sorry, but this seems to ignore the fact we are only a community because of our infection.
"Let us be part of the human struggle against this virus."
Sounds great. What are you doing to that end? I help people without money pay their bills. I try to give a voice to those that can't speak up. I stand before people and tell them what it's like to live with HIV in an effort to let people see that HIV isn't just for the Gays, Drug Addicts, or Sex Workers of the world. I help set policy for Ryan White funding.
I have no idea what a 'condition thumper' is, but if that is what you deem me and if that is someone fighting for the HIV population that can not yet fight and speak up for themselves. Yea, that's me.
Oh and anger. It does have it's place. Both good and evil come from anger. So do not discount it's importance. Most leaps in Civil Rights have been brought forth out of anger. The HIV funding enjoyed by many today, is only because people got angry. All it takes is someone deciding the status quo just isn't right anymore.
Post Extras:
|
|
Leonardo
|
|
Guru
|
|
|
|
|
Reged: 08/07/07
|
|
Posts: 233
|
|
Loc: New Jersey
|
|
|
Esmerelda,
I totally get what your saying. When I read your last post, it made me recall my experience as a gay man. In my teens and early twenties, I lived openly as a gay man in my personal life, but chose to identify myself as heterosexual man in my professional world. As I became more comfortable with my identity, I began to feel less comfortable with my professional facade and just refused to confirm or deny being gay. By the time I reached my mid-thirties, I realized that my fear of being visiible as a gay man was intentionally engineered by a society that imposes a heteronormative matrix on its youth. I came out professionally to challenge that norm and to encourage others to choose visibility.
In a very similar way, I have no doubt that the general public's perceptions about HIV would become vastly more rational if people understood that HIV+ people are no more a threat to them than the diabetic in the next cubicle.
I admire those of you who are visible examples of the "normalcy" of being an HIV+ person. I hope to join you someday, but with less than one year of experience with HIV, I'm not ready to be visible.
Thanks,
Leo
Post Extras:
|
|
|
|
Quote:
I admire those of you who are visible examples of the "normalcy" of being an HIV+ person. I hope to join you someday, but with less than one year of experience with HIV, I'm not ready to be visible.
Leo - I have no doubt that one day you will find your voice. It takes time.
It has not been a quick process for me and perhaps in the grand scheme of things it never should be. I had a lot of my own growing to do first. I had a lot to come to terms with about my own life and my own feelings about being HIV before I could even think about becoming an effective voice. Just as with generations....I think we all take up the mantle as we feel the strength to do so.
Your time will come and with your compassion I'm sure you will make a positive impact.
Post Extras:
|
|
|
|
Leo I am totally with Esmeralda on this one too, it takes time to find a good comfort zone in dealing. When you first came to terms with your sexuality, I am sure as it did me, took some time before you were really comfortable within your own skin. Your day will come, you are really well on your way and very well adjusted. This is my second year, I have a lot of growing and learning left in me, and I am taking things in stride. What I am learning right now is about loving myself. D
Post Extras:
|
|
|
|
Quote:
Quote:
I admire those of you who are visible examples of the "normalcy" of being an HIV+ person. I hope to join you someday, but with less than one year of experience with HIV, I'm not ready to be visible.
It has not been a quick process for me and perhaps in the grand scheme of things it never should be. I had a lot of my own growing to do first. I had a lot to come to terms with about my own life and my own feelings about being HIV before I could even think about becoming an effective voice.
WELL SAID AND RIGHT ON TARGET, MY SISTER!
Leo - Like you, I haven't arrived yet, BUT I'm getting closer to that point each week. Staying connected to positive people who are "POSITIVE" helps.
Let's do this together,
-Gary
Post Extras:
|
|
picaropsv
|
|
Regular
|
|
|
|
|
Reged: 01/05/08
|
|
Posts: 49
|
|
Loc: Spain
|
|
|
Hey all.
Nice discussion. Living in Small town Spain, I have no choice but to keep it all to myself. Even among the people who are close to me, only two know that I am poz. The other day the doctor pointed out that I should let my dentist know, and though I see his point, I could not agree with him when he rationalized that until all of us participate in taking away the stigma the stigma will not go away. I myself am not in any condition to wave a flag for HIV+ rights in the face of a society that will automatically shun me as they shun others who are different from the norm. I've read elsewhere that most dentists treat all patients as if they were HIV+ or had HepB or any of a wealth of comunicable diseases. Can I really put my personal and professional life in danger just because I am having some bridge work done? I have observed the precautions taken by my dentist and consider them to be adequate to protect himself and his nurses and me from any mishaps.
I agree with Bernie, it's no one's business but my own. I don't hide my homosexuality from anyone, but I also do not admit it to anyone, it's just none of their concern. My partner works in a supermarket and is terrified that if it is found out that I am poz (he is not) that he will be fired simply because he lives with me and might infect the food that he handles (by the way, he doesn't touch any food directly, it's all packaged, but well, you know what I mean). I think it is too easy for people to jump onto a bandwagon and point fingers and then pull their kids out of class because the teacher is HIV+. I am not afraid of it, but I am not going to risk it by letting anyone know. Too many people already know (doctors, nurses, etc....)
As long as I am healthy and functioning, I don't think I need to be sharing my health "problems" with others. I wouldn't go about telling everyone that my stools are loose, for example. The only thing that can't be hidden might be a head cold, or if I end up in hospital with pneumonia again, but the underlying causes are not in the public domain, at least not in my case. And I don't think a person who dedicates part of his/her life to helping others needs to suffer the same problems or even admit to them if they have them, just to be able to help. A HIV+ social worker or group leader doesn't have to admit to being HIV+ to be good at the vocation, the vocation should be there no matter what health compromises are present. If the vocation is present, the work will be done and people will be helped.
Well, just my $0.02 worth! As I said, an interesting topic to talk about, makes one think, further than "when was I infected?" type discussions!
--------------------
peace,
picaro.
Post Extras:
|
|
0 registered and 2 anonymous users are browsing this forum.
Moderator: TheBody, bogart, crabman, riverprincess, kicker
|
Permissions
You cannot start new topics
You cannot reply to topics
HTML is enabled
UBBCode is enabled
|
Thread views: 3861
|
|
|
|
|
|
UBB.threads™ 6.2.3
| |
Previous
Index
Next
Flat
Threaded
