I just turned 44 years young and thanks to the magic of cocoa butter I think I look good for my age! I say this not to ask for gifts but to acknowledge that there was a time when I thought I would never see my life extending past the age of 30.
It all goes back to the beginning when i was first diagnosed. They year was 1986 and much was not known about the disease. When I say 1986 I'm not only talking about the year but how that year signifies how much has changed and was so different back then. In fact they didn't even call it HIV, it was called HTLV-III. Now try to say that fast! Anyway according to my local health clinic that's what I had.
With the images of that time of people being denied entry to schools and swimming pools, stigma was a worldwide phenomenon as people were fearful of something that was killing people. even for myself, when I got diagnosed I thought my time was soon as back then HIV equaled death, at least in my eyes.
At the time of my diagnoses I lived in a small efficiency or studio apartment. It was basically a space with one room, a little kitchen and a bathroom. After I was diagnosed I had a visitor come to my place. It was a health worker from the clinic and I was surprised to see her.
At that time there were not many cases of infections so her job was to go out to newly infected people homes and give them instructions on how to live with the disease. So here it is this stranger who already knows about my status telling me what I need to do. The part that stood out for me at that time was that her visit wasn't a psychological visit where she wanted to know how I was handling the news. Hers was more of an instructional visit. So she gave me tips on how to avoid giving others the virus and one of her instructions were to have me pull out my mop bucket and to proceed to pull out my bleach bottle.
She then showed me how to wash down my silverware and wipe the toilet seat after each use. Again being young and ignorant about the virus I'm listening to her and not challenging her as I had little information about the disease so to me her words were gospel.
I didn't know that I was seeing stigma in it's infancy form where the belief was that you could get HIV from simply having someone use the same silverware you use or drink from the same glass. Things have changed but not that much. There is still stigma but no longer do we have nurses coming to homes with bleach.
Yet people, despite the information of HIV which is even on the net, still have the crazy ideas of how you can get the virus. For instance you still hear stories of people being served dinner with paper plates or plastic silverware. Or people who will boil a glass before they drink out of it, knowing someone who was infected drank from it. I even recently had a friend who was asking me if she was wrong for refusing to try out another friend's alcoholic drink because of his status.
Stigma is a bridge that leads to discrimination. It's a fear of the unknown that devalues those who are infected.
Stigma can also kill. It prevents people from going to get proper treatment as they don't want to see the doctor as they have to divulge personal information or feel they will be judged because they know that people are aware that the building that houses the clinic works with people who are HIV. Even the act of filling your prescription is difficult especially if it's a drug store you're not familiar with. You have a fear of judgment of not only the pharmacist but also the person at the register that rings up your meds. It’s not unusual that most people will not frequent either doctor services or get prescriptions filled in their own neighborhood and will travel miles away to other areas for services.
I say stigma kills because people feel like a pariah and won't even get themselves tested to see whether they even have the virus. It's usually when the disease has done so much damage do they find out and by that time it's to late for any medication to work.
Yet I have to acknowledge there are those who despite the stigmas live their lives as full as they can despite what people think. So not everyone with the virus walks around as a victim. Yet everyone experiences are different and so my story is different from your story and so on and so on.
I consider myself one of the ones who don't let stigma stop me from a full life as I refuse to live by others judgment. We're only on this earth once and it's too many people in the world for me to try to make fell safe. But again we're talking about someone who's lived with this for years so my knowledge comes from a transformation of educating myself and learning from others by hearing their stories. There's value in knowing that what you're experiencing is the same experience that others go through. There's even the added value of hearing how they overcame the barriers of stigma.
So what advice can you give someone newly infected or clueless of their status out of fear? Maybe hearing your voices will help them overcome the barrier that we call Stigma and united lift them up.
It's easy to condemn someone for not being where you are so what's your affirmation to help someone living in fear get to a place where fear no longer rules their lives. Anyone willing to share?
It all goes back to the beginning when i was first diagnosed. They year was 1986 and much was not known about the disease. When I say 1986 I'm not only talking about the year but how that year signifies how much has changed and was so different back then. In fact they didn't even call it HIV, it was called HTLV-III. Now try to say that fast! Anyway according to my local health clinic that's what I had.
With the images of that time of people being denied entry to schools and swimming pools, stigma was a worldwide phenomenon as people were fearful of something that was killing people. even for myself, when I got diagnosed I thought my time was soon as back then HIV equaled death, at least in my eyes.
At the time of my diagnoses I lived in a small efficiency or studio apartment. It was basically a space with one room, a little kitchen and a bathroom. After I was diagnosed I had a visitor come to my place. It was a health worker from the clinic and I was surprised to see her.
At that time there were not many cases of infections so her job was to go out to newly infected people homes and give them instructions on how to live with the disease. So here it is this stranger who already knows about my status telling me what I need to do. The part that stood out for me at that time was that her visit wasn't a psychological visit where she wanted to know how I was handling the news. Hers was more of an instructional visit. So she gave me tips on how to avoid giving others the virus and one of her instructions were to have me pull out my mop bucket and to proceed to pull out my bleach bottle.
She then showed me how to wash down my silverware and wipe the toilet seat after each use. Again being young and ignorant about the virus I'm listening to her and not challenging her as I had little information about the disease so to me her words were gospel.
I didn't know that I was seeing stigma in it's infancy form where the belief was that you could get HIV from simply having someone use the same silverware you use or drink from the same glass. Things have changed but not that much. There is still stigma but no longer do we have nurses coming to homes with bleach.
Yet people, despite the information of HIV which is even on the net, still have the crazy ideas of how you can get the virus. For instance you still hear stories of people being served dinner with paper plates or plastic silverware. Or people who will boil a glass before they drink out of it, knowing someone who was infected drank from it. I even recently had a friend who was asking me if she was wrong for refusing to try out another friend's alcoholic drink because of his status.
Stigma is a bridge that leads to discrimination. It's a fear of the unknown that devalues those who are infected.
Stigma can also kill. It prevents people from going to get proper treatment as they don't want to see the doctor as they have to divulge personal information or feel they will be judged because they know that people are aware that the building that houses the clinic works with people who are HIV. Even the act of filling your prescription is difficult especially if it's a drug store you're not familiar with. You have a fear of judgment of not only the pharmacist but also the person at the register that rings up your meds. It’s not unusual that most people will not frequent either doctor services or get prescriptions filled in their own neighborhood and will travel miles away to other areas for services.
I say stigma kills because people feel like a pariah and won't even get themselves tested to see whether they even have the virus. It's usually when the disease has done so much damage do they find out and by that time it's to late for any medication to work.
Yet I have to acknowledge there are those who despite the stigmas live their lives as full as they can despite what people think. So not everyone with the virus walks around as a victim. Yet everyone experiences are different and so my story is different from your story and so on and so on.
I consider myself one of the ones who don't let stigma stop me from a full life as I refuse to live by others judgment. We're only on this earth once and it's too many people in the world for me to try to make fell safe. But again we're talking about someone who's lived with this for years so my knowledge comes from a transformation of educating myself and learning from others by hearing their stories. There's value in knowing that what you're experiencing is the same experience that others go through. There's even the added value of hearing how they overcame the barriers of stigma.
So what advice can you give someone newly infected or clueless of their status out of fear? Maybe hearing your voices will help them overcome the barrier that we call Stigma and united lift them up.
It's easy to condemn someone for not being where you are so what's your affirmation to help someone living in fear get to a place where fear no longer rules their lives. Anyone willing to share?
2 comments:
Good post. Defines very well the feeling and the situation of many of us. You can live well with HIV. Living without fear of stigma is difficult, but you can. Not to suffer the stigma not to disclose your illness. Clearly this depends on the mind of each individual situation, economic, social and family life.
I think I don't know a single person who could accept me completely. I'm even not sure if it's possible. There is always an issue. Whenever the cause of collision is my HIV status or my boyfriend's race or anything else.
What works for me is to set my own standards on communication. I became very harsh lately. Whenever it's subtle or explicit judgement, the explosion will definitely follow. I've already had it up to here and I've got a lot to say.
But the trick here is to speak on the topic avoiding going into personals. So I can let feelings out without shattering the relationship. Once I've found this hint in A. Neill's book and it worked pretty good for my self-expression.
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