POSITIVELY AWARE MARCH/APRIL 2011
I picked up Positively Aware (January/February 2011 issue) for the first time and I have to tell you, among all the HIV/AIDS magazines and newsletters, yours is a breath of fresh air.
I’m a 62-year-old gay white man who tested positive in 1987 but knew I had the virus years before—when all of my friends and partners started dying in the early 80s, it was the only logical conclusion.
But I’m still here. Today, I deal with both the side effects of the handful of medications I take each day and of getting older. Talk about a TKO!
It’s good to know that finally, there’s a journal that gets it. Articles that I can relate to. Information smartly presented in a clear, concise manner. Thank you.
—Stan Stoj
I am HIV-negative, but my partner is positive, and we are both bisexual and inmates in the same state prison. It hasn’t been easy for us—we have had to deal with name-calling, discrimination, and a lot of people talking behind our backs.
Myself being negative, I knew nothing about HIV before I met my partner. He has taught me a lot. It’s been difficult at times in our relationship because there are things we have to be careful about like open cuts and bleeding. We’ve worked through it though, and it has made our relationship stronger.
It sometimes gets stressful for me because I want to make sure he gets his treatment every day and make sure he takes his pills. I try to keep his spirits up. Your magazine has helped me to understand how to deal with his mood swings and I’ve learned about the different medications and the ones soon to be available. I share this information with him and his nurse.
It hasn’t been an easy road, but with effort and love, we make it work. So just because one of us is negative and one positive, both bisexual and inmates, doesn’t mean a relationship can’t work. Thank you for keeping us both informed—it gives us hope for the future.
—Darrell C.
I picked up a copy of PA (January/February 2011) at my pharmacist’s office today and when I read your opening note, I almost fell over. Our stories are so similar: I was living in San Jose and the week before I turned 30, I decided to get an HIV test. I honestly didn’t think I would test positive; not because I was so pure or a stranger to the occasional bath-house, but just because it seemed (in 1985) the people getting sick were people who were on the “extreme”, or so I thought.
I actually was the first person at this clinic to test positive. The woman giving me the results was so upset that she almost couldn’t tell me. There was no counseling or follow-up; she just handed me my slip and out I walked.
The rest of your editorial is so on-the-money. AIDS is so complicated. People see that I’m still alive and want to believe that it is a “manageable chronic illness”— like diabetes. What people don’t get is that it is not “just” a manageable illness. Like you, I’ve dealt with fat displacement, diabetes, had all the calcium leeched from my teeth and bones, etc. etc. etc. The people that are coming up behind us who think that “Well, by the time I get sick they will have a cure, or there will be better treatments” need to think again.
In fact, we are just beginning to understand the long-term destruction that nukes do to our bodies. These drugs are not benign in any way. Yes, we have streamlined some of the therapies, but like you said, I also am dealing with cholesterol and heart issues, high blood pressure, and other diseases that shouldn’t occur for another couple of decades.
I felt compelled to tell you how much your column struck home with me. I wish that every young person could be handed a copy of it before they make the decision that “it won’t be that big of a deal.”
—Doug Halloran
I wanted to let you know just how much I enjoy your magazine. I tested positive in 2002 when my T-cells were at 50. I’m very much better now, with T-cells at 600-700 and I’ve been undetectable since 2003.
I’ve been in prison since 2005 and discovered your magazine in here. I find your magazine goes more in depth on lots of subjects than other publications. I study HIV from any source I can get and I’m not so scared of HIV now. You give me hope for the future with the stories and great tales from all over the country. You show me that I am not alone.
I look forward to receiving your magazine to smile, inform, and make me cry, too—it’s all good. Thank you.
—Ronnie C.
In reading “Status Symbols” by Sue Saltmarsh, I was struck by the comment, “Could we conclude from this experience that perhaps stigma and prejudice are more internal than external?”
After developing and presenting many trainings on stigma to providers of social services, medical facilities, and groups of those living with and affected by HIV/AIDS, I can say that the statement is partly true. I find that there is as much internalizing of stigma among those living with and affected by HIV/AIDS as there is ignorance in the general population.
Once when I explained that I was buying things for an HIV support group, a woman asked me, “Oh HIV, doesn’t that cause them to lose their hair?”
It was an indication of the public’s ignorance about AIDS and demonstrated that we educators are not doing enough to educate our whole communities about what HIV/AIDS is. I want one of those t-shirts to wear maybe I can show them my full head of hair and dispel any other myths held about life with HIV.
—Paolo Presta-Gunton
Sue Saltmarsh responds: Thanks to Paolo and all the others who have written in asking where they can get one of the “HIV Positive” T-shirts featured in the article. Though not the same ones, HIV-related T-shirts are available at www.nightsweats.com and www.cafepress.com.