Today I met with UF Health CARES only to find out that my paperwork from Daytona was not conpletely faxed across. I couldn't prove that I ever had a registered viral load. Too the doctor that reviewed the portion of the test that came across the fax it looks like I have always been undetectable. This one mistake made my entire visit there non-productive. I had to have my blood drawn to get a new proof of positiveness letter and reschedule my appointment for 2 weeks away. This is rather disappointing because that means it will be another two weeks before I am finally enrolled in Ryan White services. I can tell you that the visit wasn't entirely a waste. I met Brandon during my visit, a highly intelligent young man who besides being heterosexual, he was also born with HIV.
Though we didn't have as much time I would have liked. I got to discuss a bit of his story as I told him my own. One thing that I was capable of doing was answering many of the questions that he had. I am amazed that even today persons with HIV can still feel prejudice and stigma. Which can trigger deep depression and feelings of fear, persecution, alienation. All of which can instill a deep and abiding sense of worthlessness and a lack of self-worth. Which according to Brandon has often made him feel as if he were a burden to others and unlovable.
His most relevant question for me was how do I stay positive and grounded? Luckily for him I was asked almost the same question not an hour before by the social worker for my primary care team at the VA. My answer to their question was simply that first I don't dwell on my illness and second that I use my blog as a sort of catharsis. That's right my coping mechanism is writing in my blog as well as telling to others my story every chance I can.
Like Brandon, I still deal with stigma and fear. I also know from our talk today that fear is a constant companion. Like me, we both fear how others will react to our disclosure of our illness. How others will receive us. The fear that others will reject us and thus diminish our hopes for a relationship. There are now treatments that a mixed couple (one poz and the other not). This maybe an option for some. But what if your potential partner isn't willing or not educated about it. However you decide to handle this dilemma is up to you.
But there is a whole lot more to Brandon than meets the eye. He feels compelled to help others, he has dedicated himself to the expansion of HIV research. In his own words he felt like he had a debt to pay becausr of everything he went through and his still being alive. With that debt in mind he dedicated himself in his sisters memory to constantly trying make a difference and help those around him.
Whether we want to accept it or not fear, misconception , stigma and prejudice still persist today. There are groups like the positive champions speakers bureau that work hard to stem these injustices and seek to educate and elighten the community of the truth of this disease. Back in the 1980's and the 1990's HIV/AIDS was headline news. There were marches, charity drives, concerts and an outpouring of information. Now, there is barely mention of AIDS Related death's and one rarely hears of the infection rates. Yet, one thing that I have learned is that in some of the nations largest cities. The majority of people being diagnosed, are dianosed with full blown AIDS versus being diagnosed with HIV.
As I explained to Brandon that my telling of my story has a two fold reward for me. It gives me the opportunity to talk to others one on one about what I went through and how it has affected me both positively and negatively. The second is that I am inspiring hope in others who might have given up on themselves and society in general.
One of the things about me is that I truly enjoy talking to people and it makes me feel like I am helping others and gives me a sense that I am giving something back to the community.
So if you are looking for a way to cope with your feelings of anxiety and depression or are looking for ways to deep or cope with stereotypes and stigma. Then maybe you should take up writing and talking to others about your story. I honestly think that you will find that your depression lessens and your self-worth will increase.
You are not doing this for yourself alone yet you will reap the most benefit from doing these things.
As always my hopes and prayers are with you. Love deeply, laugh often and live much.
Uncle B
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