Personal Experience with Stigma

Often the battle with HIV is not only against the virus it’s self, but it is against the stigmas that surround those who are effected with the virus.  We have all experienced negative stigmas surrounding our HIV status or stigmas related to any other chronic illness, and we each have stories that we could tell about how those experience have effected us personally.

My intentions of this blog entry is to share two experiences that will stay with me for the rest of my life.  I learned a lot from them, and I hope others can as well.

The first experience I have written about before but it is the hardest for me still to this day… It was soon after my diagnosis and I had told me family about my status.  I was at home for the first time on leave for a good friend’s wedding.

I had been home for a few days before I noticed anything strange.  At first it was little stuff like my mother hand washing all the dinner plates and utensils after I had eaten.  Then I started to notice more and more things that were “unusual.” The biggest thing I noticed was that my sister was no longer using the bathroom that we had always shared.  She had moved all of her stuff into our parents bathroom and that is the only one she would use.  I finally confronted my mother about the situation and her response about killed me.  She told me that my sister was scared and that in-fact they all were scared. Now to have your own family scared of you is heartbreaking.  I wanted to cut my trip home short and return back to Cali where at least I felt like I had people who could understand.  I truly have nestigma3ver been so hurt in my whole life.

I ended up staying the entire time but I made sure to spend as little time in the house as I possibly could.  I just did not want to be around my own family because it felt like they did not want me around.  After returning to Cali, I went to my clinic and told them about my situation and asked for every pamphlet and print out they had about HIV and more specifically how you could and could not catch it.  I took all this information and highlighted what I thought they needed to read and simply put it in a box and mailed it to my entire family.

Since that time, things have pretty much gotten back to normal with my family.  We still don’t talk about my status and that is fine with me (most of the time).

The second incident that will stick with me forever happened while I was still in the Marines and out in Cali.

I had been placed on a general work crew with 2 other Marines.  One of which knew my status because we had become friends and I had told him.  The other, I was unaware of the fact that he also knew, he had never said anything about it.  On this one day we were doing some general duties around base and we were all ridingdrop of blood in the one Marines truck, the Marine who I didn’t know he knew.  Apparently I had gotten a cut on my elbow while trying to install some new gear and I was unaware of it.  We all finished up what we were doing and loaded back up in his truck.  I got one drop of blood on the back seat of his truck where I was riding.  When I noticed it, I offered to go get some cleaning supplies and get it out, but he told me not to worry about it. Well two days later when I saw him again I noticed he was driving a new truck.  I asked my buddy who knew my status about it and that is when he told me the truth.  The Marine with the truck was so afraid that he was going to catch HIV from that one drop of blood on his back seat that he went that very afternoon when we all were dismissed for the day and traded his truck in for a new one.I was once again devastated and embarrassed and so many other emotions that I can’t really put into words.  Things never were the same between us again.

These are just two of the instances of negative HIV stigma that I have faced and that will stick with me for the rest of my life. It is because of instances like these that I want to fight so hard to erase those negative stigmas and stereotypes that surround people living with HIV.

This was not meant to make anyone sad or depressed, it was intended to help educate.  Through telling our own stories we can all work together to help erase these stigmas.

11 comments on “Personal Experience with Stigma”

  1. John says:

    For me it is about understanding and education. Having siad that I am an HIV + ER nurse and I see and live the effects of the stigma everyday. The nurses I work along side are the worst and it is sad because they are the most educated. I have learned to deal with the stigma but for that very reason i am very selective about who and how much information I give about myself. I am lucky in that my boss is a gay male (also a nurse) and he is aware of my status should somethng happen in the ER . That siad I am super vigilant about everything despite being health and undetectable. It is nit so much about stigma these days as it is about ignorance. In which case there is no room for either!

    1. Brian Brian says:

      Yes, you would think those that work in the medical field would be the last to pass judgment and to have those negative stigmas that surround HIV but I too have found that that is not always true. I wish you the best of luck and I do hope things get better.

  2. Kit says:

    It just goes right over my head that we have so much information in today’s age and yet people still act like this…and instead of even educating THEMSELVES they’d rather live in unjustified fear and take it out on those who need them the most. It’s unbelievable. I think it gets worse the further South you go (at least here in the U.S.). I have this fantasy of being able to send out flyers or pamphlets or just some means of carrying information to the smallest towns that suffer the most from ignorance. I think.. no, I KNOW even this small act would have so much influence–as much as it bothers me that it’s even necessary to do it–and I have so much respect for the people who actually do this to fight stigma. I’m so sorry you’ve had to endure being treated like that.

    1. Brian Brian says:

      I agree, I wish I could just send out pamphlets to everyone I encounter who is uneducated and carry on negative stigmas about any illness. But even going through these experences, and this is just two of many, I am a stronger person and in some small way I have helped educate others.

      1. Kit says:

        I’m sure your sharing is a huge help to those who want to know someone else understand their experience but might not yet have the courage or ability to speak up.

  3. Rob says:

    I’ll never go to PatientFirst ever. My experience with a doctor there was that of being judged. He didn’t come right out and say something specific, but his comments, facial expressions and overall body language made it clear that he didn’t want to be in the same room with me.

    Thanks for sharing your experiences. I hope that they are the only experiences you ever have with HIV stigma.

    1. Brian Brian says:

      I am sorry that happened to you Rob. We all hope that when we go to the Dr. that that will be the last place in the would we would encounter stigma. These are just two examples of the countless times I have had to fight stigma related to my disease.

  4. Charles says:

    Brian,
    I have a similar story….By way of information I am gay but married to a woman and have 3 kids. I am out to my wife and kids as gay and poz but have elected to stay married(which has been hard enough).

    I have always been the cook in the family…Even when we get together with family(mostly her side of the family since mine are all scattered), when at my home I always cook and when at someone else’s home I am always helping out in the kitchen. Soon after being diagnosed my wife told me that I was to never be involved with food preparation in anyone’s elase home but ours. Which really hurt. And after a year post diagnosis I realized that noone in her family ever came over for dinner when invited. I confronted my wife and she said that they are afraid to eat anything I cook. When we are invited to a family member’s home I would always bring a dish or desert and found that the onyl ones that ever ate what I cooked was my own family. I confronted my wife again and she said they dont’ feel comfortable eating food I cooked. I am beginning to stay away from those family gatherings to avoid how hurt I feel. The otehr night we stopped by my mother-in-laws house and brght desert(store bought)and I got up to get a knife from the drawer and my wife told me not to touch anything. Stimga sucks.

    1. Brian Brian says:

      Charles,
      I am so sorry that that type of situation has happened to you. Yes I agree Stigma sucks. It is always made harder to deal with when it is those closest to us who are the ones that are portraying the negative stigmas around us. Just be strong and try and help educate. Through education, even one person at a time, we will be able to erase those stigmas and help eradicate them from the HIV community. Thank you for sharing some of your personal story with me.

  5. brian says:

    Thanks for sharing some of your story. I look forward to hearing many more in the future.

    1. Brian Brian says:

      Thank you. Please feel free to look back over some of my older post and make sure to keep an eye out for new things to come.

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