{"id":4892,"date":"2020-02-27T10:35:37","date_gmt":"2020-02-27T10:35:37","guid":{"rendered":"http:\/\/www.mymedicplus.com\/news\/?p=4892"},"modified":"2021-03-31T00:40:12","modified_gmt":"2021-03-30T19:10:12","slug":"long-term-survivors-of-hiv-aids-reflect-on-what-theyve-witnessed-and-endured","status":"publish","type":"post","link":"https:\/\/www.mymedicplus.com\/blog\/long-term-survivors-of-hiv-aids-reflect-on-what-theyve-witnessed-and-endured\/","title":{"rendered":"Long-term survivors of HIV\/AIDS reflect on what they\u2019ve witnessed and endured"},"content":{"rendered":"\n<p>Source:pbs.org<\/p>\n<p>More than 500,000 people over 50 in the U.S. are growing older with the human immunodeficiency viruses (HIV) that, if untreated, cause acquired immunodeficiency syndrome, or AIDS.<\/p>\n<p>While some have contracted HIV\/AIDS in their later years (sparse sexual health promotion for older adults is often to blame), the bulk of these survivors were diagnosed decades ago, back in the throes of the AIDS epidemic of the 1980s and 1990s, when attitudes and treatment of the virus were inapt at best, inhumane at worst. Before the terminology we use now was around. Before effective medication emerged. Before an understanding of how HIV\/AIDS is actually transmitted. Before life expectancy was more than a handful of years.<\/p>\n<p>Long-term survivors of HIV\/AIDS have prevailed through traumatizing combinations of adverse life events and are now aging into their 50s, 60s, 70s and beyond. And they are struggling: PTSD and other mental illness is essentially ubiquitous; housing and financial insecurity (when you\u2019re not expected to live, you don\u2019t plan for a future); health issues doctors\u00a0can\u2019t explain and don\u2019t completely understand\u00a0and debilitating community-wide isolation and loneliness.<\/p>\n<p>But these are fighters, and they\u2019re not without hope. These conversations with them present four of their stories.<\/p>\n<p><strong>Stephanie Stuart:<\/strong>\u00a0I think the stigma is still there. I have met guys that expect me to be on PrEP [daily medicine that prevents HIV], expect me to know my status, but are not taking care of themselves. They\u2019re not on PrEP. They don\u2019t know their status. And when you question them: Why? It\u2019s, \u2018Oh, I don\u2019t need to be, I\u2019m not at risk.\u2019 We\u2019re all at risk, darling. Everybody should know their status. People are worried about getting this deadly disease that\u2019s not a deadly disease anymore.<\/p>\n<p>I think the conversation has quieted, and it needs to be louder. I feel like I\u2019m standing on a street corner by myself with a sign that says, \u2018Hey, I still got HIV. I\u2019ve still got it.\u2019 Everybody\u2019s driving by. Nobody wants to help. Nobody wants to talk about it. People are still being infected every day. Unfortunately, people are still dying from the disease, but a lot of us are living a lot longer, and it\u2019s not the death sentence that they gave me. It is building a complacency in our community. If your status is positive, then go to the doctor, start taking this medication, get your status to undetectable and then nobody can transfer the virus to anybody. Undetectable equals untransmittable.<\/p>\n<p><strong>What do you want people to understand about you and living with HIV?<\/strong><\/p>\n<p>I don\u2019t want them to forget us survivors, what we\u2019ve been through. Because a lot of us carry a lot of survivor\u2019s guilt. When I was first diagnosed, that was the time period where someone would come in the bar and the word would get around that they\u2019ve just been diagnosed and you really could pull out a calendar and mark a year and a half to two years and somewhere during that time they would be gone. And it happened a lot. I lost a lot of friends during that time.<\/p>\n<aside class=\"pullquote\">\n<div class=\"pullquote__quote\">I don\u2019t want them to forget us survivors, what we\u2019ve been through.<\/div>\n<\/aside>\n<p>I\u2019d wanna remind people: Don\u2019t forget what we\u2019ve been through. But then you also need to celebrate the fact that \u2014 look at the strides we\u2019ve made with HIV treatment and how healthy a lot of us really are now. When I tested HIV positive. I came home\u2026 It\u2019s a wonder I didn\u2019t drive myself off the road that day coming home. I cried all the way home. I got home, I literally threw myself on the floor and had a temper tantrum and a meltdown. They had just told me I only had two years to live.<\/p>\n<p><strong>What concerns you most about growing older with HIV?<\/strong><\/p>\n<p>I\u2019m only fifty-four but because I\u2019ve been on HIV medicine for so long, they say it ages your organs. So my organs could be about sixty-four. I feel my strength waning sometimes. I worry about not having enough food. I worry about not having a place to live at some point. What if the government is going to change their view on HIV and all of this goes away? But the one thing I worry about the most \u2014 and this probably comes from taking care of my [late] wife \u2014 and that is not being able to take care of myself, because I don\u2019t really have anybody I can rely on to help me. At this point, if I get sick, it may not be the HIV doing it. It might be a heart attack. It might be a stroke \u2014 something along those lines that can debilitate you. And then you\u2019ve got that on top of having to remember to take the HIV meds.<\/p>\n<p>I\u2019m just kind of hoping it doesn\u2019t happen. I am really hoping that when my time comes, I\u2019m on stage somewhere and I do the ultimate death drop and check out. Several years ago [in St. Petersburg, Fla.], there was a benefit and one of my sisters walked off stage into the dressing room and collapsed. And she was gone. They said her heart exploded. And I kept thinking, \u2018I\u2019m going to miss you, but damn girl. That\u2019s the way to do it. Go the way you want to go, doing what you love to do.\u2019 If it turns out that way with me and I need somebody\u2026 I\u2019m deeply spiritual, and I\u2019m sure the Lord will provide and somebody will be there.<\/p>\n<p><strong>What message would you like to send to younger people living with HIV or people who are newly diagnosed?<\/strong><\/p>\n<p>There\u2019s no need to be afraid anymore. When I was diagnosed back then, it was a situation where someone would be diagnosed with HIV, and they\u2019d go back two weeks later and then it\u2019s, \u2018Oh, you\u2019re not only HIV, you\u2019re full-blown AIDS\u2019 \u2014 barely having time to digest the fact that they\u2019ve tested positive, to now they\u2019ve got this awful disease. And those situations are almost obsolete nowadays.<\/p>\n<p><strong>Grace Birnstengel: How has the world and the conversation around HIV changed \u2014 or not changed \u2014 since you were diagnosed?<\/strong><\/p>\n<p><strong>Robert Toth:<\/strong>\u00a0Well, it\u2019s gotten real confusing. I had an appointment with my HIV doctor, and I said, \u2018Can you settle the question? Am I a person living with AIDS or am I a person living with HIV?\u2019 She goes, \u2018Well, you\u2019re both, but you are a person living with AIDS.\u2019 The word AIDS needs to be used. If you were ever diagnosed with your T cells at two hundred or below, no matter where they are now, you are still a person living with AIDS. That was a surprise to me. I was like, \u2018That\u2019s really depressing, but thank you for clarifying that.\u2019 It\u2019s important to make that distinction because it\u2019s important to not erase all those people that died of AIDS. We\u2019re lucky that we live in a country that we have the\u00a0Ryan White CARE Act\u00a0that provides those medications free of charge to anyone who needs them. Thank you, Ryan White. God bless you. Jeanne White, his mother, she\u2019s an AIDS activist. God love her for doing what she\u2019s doing.<\/p>\n<p><strong>What do you want people to understand about you and living with HIV?<\/strong><\/p>\n<p>I\u2019ve had the life experiences of a ninety-year-old and I\u2019m only sixty-years-old. I\u2019ve lost all my peers. My contemporaries are dead. I buried them, sprinkled their ashes, went to their memorials. So say hi to us. Invite us out to lunch. It can be a cheap place. I can afford lunch. I never expect anyone to pay. Let\u2019s go to a movie. It\u2019s nice to get out of my apartment. Know we\u2019re still here. Hug us. A hug changes the body chemistry.<\/p>\n<aside class=\"pullquote\">\n<div class=\"pullquote__icon\">\u00a0<\/div>\n<div class=\"pullquote__quote\">I\u2019ve had the life experiences of a ninety-year-old and I\u2019m only sixty-years-old.<\/div>\n<\/aside>\n<p><strong>What concerns you most about growing older with HIV?<\/strong><\/p>\n<p>Well I was just in the hospital in the ER about three weeks ago, and there was nobody I could call. There was nobody who would, number one, answer the goddamn phone, and if they did, they wouldn\u2019t know what to do. So it\u2019s just this feeling of loneliness. It\u2019s not healthy. I have a cat, and cats are cats. Can I take a cat out for a walk? I can try, but it ain\u2019t gonna work.<\/p>\n<p><strong>What message would you like to send to younger people living with HIV or people who are newly diagnosed?<\/strong><\/p>\n<p>Number one, take a deep breath because you can live a full, average adult life because the medications do work if you take them properly. You can get married, which is something I didn\u2019t have when I was young and gay. I didn\u2019t have that future to envision \u2014 to be allowed to envision a future with a man, with a partner. Use it [the right to marry] if you find someone. Stop doing the drugs, period. If you can stop smoking cigarettes, do that, or at least smoke less. If you have a problem with alcohol, get into recovery. Don\u2019t be around the people who are still dabbling. Maintain your friendships. It\u2019s something you\u2019ve got to work at. It\u2019s a job that I failed to do, or I did, but they died anyway. Undetectable is untransmittable. U equals U.<\/p>\n<p><strong>Sharon Bosley:<\/strong>\u00a0It really hasn\u2019t changed \u2019cause stigma\u2019s still existing. People are still denied housing because of their status, losing jobs because of their status. The medicine has advanced. We can live longer now. It\u2019s a chronic illness like anything else, but the way we\u2019re treated is not good. Down in the south, like in Atlanta and South Carolina and North Carolina, their care down there sucks. And I think I was blessed that I was living in Baltimore when I found out because I think about living anywhere else \u2014 I wouldn\u2019t be living. You get great care here in Baltimore, but I had a friend, she was born with HIV because her parents were drug users, and she lived in [nearby] Howard County, and she had to move from Howard County to Baltimore city because Howard County didn\u2019t have the care or the support that she needed.<\/p>\n<p><strong>What do you want people to understand about you and living with HIV?<\/strong><\/p>\n<p>We\u2019re just like everybody else. It\u2019s just like people with cancer, diabetes or heart problems. You can\u2019t get it from looking at us or using the same bathrooms. There\u2019s still that mentality that you get it from hugging or kissing. As long as you take your medication, you can live well.<\/p>\n<p><strong>What concerns you most about growing older with HIV?<\/strong><\/p>\n<p>It affects your body. It ages your body by ten years. I\u2019m fifty-nine, but my organs \u2014 because of the virus and how it attacks your immune system \u2014 my organs are like sixty-nine. I don\u2019t know why. They don\u2019t know why it ages our organs faster, but it does. You might have disease a lot sooner than expected or mental problems a lot sooner. But I just pray and keep it pushing. That\u2019s all you can do. You can\u2019t change anything. When I go to support group, I try to encourage the newly-diagnosed people to take their medication as prescribed. It makes a difference. Take it all the time. You can\u2019t take no breaks.<\/p>\n<p><strong>What message would you like to send to younger people living with HIV or people who are newly diagnosed?<\/strong><\/p>\n<p>Take your medicine. Hook up with somebody that\u2019s a long-term survivor \u2014 like a buddy system \u2014 that can explain to you the importance of taking your medication and how to live well. \u2018Cause you can live well if you do what you\u2019re supposed to, just like any medication.<\/p>\n<p><strong>Grace Birnstengel: How has the world and the conversation around HIV changed \u2014 or not changed \u2014 since you were diagnosed?<\/strong><\/p>\n<p><strong>Joseph Gaxiola:\u00a0<\/strong>The biggest thing I would say that changed from then to now was the fact that we\u2019re still here. Before that it would be like, \u2018Oh, I have this length of time.\u2019 I was given five years, so I was literally counting, \u2018I\u2019ve got three more years to go. I got four more. I\u2019ve got two. This is my last year.\u2019 Now it\u2019s like: I\u2019m here. I\u2019m still here. I\u2019m fat. I\u2019m grumpy. I\u2019m talking. I\u2019m functional.<\/p>\n<p>Recently, I was taking an Uber here in Phoenix, and my Uber driver, he thought it was done. He thought there was a cure. He didn\u2019t realize that HIV was still around because it\u2019s not in the public eye, not in the news. I stupidly thought that the stigma was gone, but then it reared its ugly head when Charlie Sheen came out as being HIV, and all I heard was, \u2018Well, what do you expect \u2014 with his lifestyle?\u2019 The vice chair here [at the Joshua Tree Feeding Program], Peter Rodriguez, he always states the fact that when you tell people you have HIV, they look at you while going, \u2018Oh, what did you do?\u2019 But if you tell people you have cancer, it\u2019s like, \u2018Oh, I\u2019m so sorry.\u2019<\/p>\n<p><strong>What do you want people to understand about you and living with HIV?<\/strong><\/p>\n<p>Don\u2019t count me out. Just because I\u2019ve had this for twenty years\u2026I\u2019m not going anywhere. The HIV community here in Phoenix or even Arizona, we\u2019re a tight-knit group. We take care of ourselves; we take care of our own, but we could always use more help.<\/p>\n<p><strong>What concerns you most about growing older with HIV?<\/strong><\/p>\n<p>Those of us who are longtime survivors \u2014 there are other things popping up now because we weren\u2019t expected to live this long. My pills I take for HIV are basically poison \u2018cause it has to kill the virus that\u2019s living in me. So you don\u2019t know what else it\u2019s going to do to your other organs.<\/p>\n<p>It\u2019s all the other things that are now creeping up to us, between the medications that we\u2019re taking as well as just the fact that we\u2019re getting old. We\u2019re on the fast lane of getting old. The fatigue, my liver, the colon cancer. My father went through colon cancer. He\u2019s twenty years older than I am. So I equate that the inside of my body is basically twenty years older than I am now. Things are happening to me health-wise, outside of HIV, that are happening to people basically twenty to twenty-five years older than I am. I wear progressives, and I\u2019m going to have to go to trifocals.<\/p>\n<p><strong>What message would you like to send to younger people living with HIV or people who are newly diagnosed?<\/strong><\/p>\n<p>In San Diego, I was briefly a one-on-one counselor. I was part of a program. I would literally put twenty dollars on the desk in front of somebody who was newly diagnosed and said, \u2018If you follow your doctor\u2019s rules, take your medications, I guarantee you\u2019ll be undetectable in six months, and if you are not and you did all that, then you can have this twenty dollars.\u2019 I only had to give that up once just because the doctor couldn\u2019t figure out the right cocktail. Take your medications, listen to your doctor and listen to your body. And as long as you do what you\u2019re supposed to do, you\u2019ll be fine.<\/p>\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":4893,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[5],"tags":[62,52,3162],"class_list":["post-4892","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-aids-hiv","tag-aids","tag-hiv","tag-survivors"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Long-term survivors of HIV\/AIDS reflect on what they\u2019ve witnessed and endured - MyMedicPlus<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.mymedicplus.com\/blog\/long-term-survivors-of-hiv-aids-reflect-on-what-theyve-witnessed-and-endured\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Long-term survivors of HIV\/AIDS reflect on what they\u2019ve witnessed and endured - 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