Overcoming the Stigma of HIV
â€œHIV isnâ€™t the end of the world. HIV is actually just the beginning.â€
After his girlfriend’s infidelity and the messy breakup that followed, Joshua Middleton was reeling. Desperate to suppress his pain, Middleton partook in long nights of heavy drinking and a string of one-night stands.
Despite his reckless behavior, Middleton never imagined hearing the words: “you are HIV positive.”
Ever since the 26-year-old San Diego native became sexually active, he went for annual routine tests for all STDs, including HIV. In June 2012, he received the dire news that his test came back positive for HIV.
“I was in shock,” Middleton recalled. “I was angry, angry at myself. I had the education about (the disease), but didn’t protect myself or put what I learned into practice.”
Like many high school students, Middleton grew up learning about the risks of HIV, and in college he even took a human sexuality course. However, it was something he never paid much attention to or ever thought it would happen to him, until it did.
“I was sad knowing that I was never going to get back my HIV-negative status,” Middleton said. “Then I was fearful of how other people would react. I knew how I looked at the virus before, I knew how a majority of the world looked at the virus.
“It wasn’t so much the fear of dying or anything like that. I knew there was treatment, my brother’s an internal medicine doctor. I knew that I would live. But then at the same time, I didn’t know how other people would react. It was fear of the unknown that kind of overtook me.”
Although Middleton had several prior health-related issues from a bacterial infection, upon first hearing of his HIV status he didn’t cope well.
“When I was driving home, I actually contemplated ending it all, pretty much,” Middleton said. “I was in such a deep and dark place at that point like, ‘I just need to get away from this world and I don’t want to be a burden on people and deal with that unknown.’”
However, after acknowledging all the supportive people Middleton had in his life, he was able to talk himself off the ledge.
“I’ve had very supportive parents my whole life and a very supportive support network in general, because I had already been through a lot of stuff with my leg,” Middleton said. “I had necrotizing fasciitis; I had been hospitalized like 30 times for cellulitis. I felt a lot closer to death in those instances than I ever did with my diagnosis.”
Middleton is unable to pinpoint exactly who he contracted the virus from; however, he believes it most likely came from the ex-girlfriend who cheated on him several times or from various sexual encounters in the months that followed the breakup.
“After I broke up with my ex, I had a really hard time coping with the breakup and being single,” Middleton said. “I thought it was going to be like a picture perfect, white picket fence life. When that didn’t happen, I kind of went off the sidelines and started partying a lot more, a lot of one-night stands.”
Middleton said making the phone call regarding his status was one of his most difficult days. Although Middleton would like to place the full blame on his ex-girlfriend because she cheated on him, he couldn’t be sure it was her.
“If I had to put my odds on whether it was her or someone after, if I was a betting man, I would probably say it’s more 70% someone after and maybe 30% her,” Middleton said.
After breaking the news to his ex, her reaction was something that would haunt him.
“She just let out this scream that I had never heard, like as soon as I told her,” Middleton said. “That stuck with me, I had nightmares about that forever.”
A couple of his ex-girlfriend’s relatives who Middleton was still in contact with told him she tested negative for HIV, but he is unsure whether that is true. Not knowing exactly where the virus came from was something that Middleton struggled with when coming to terms with his disease.
“I knew it was from her or someone after, but I didn’t really pinpoint it,” Middleton said. “That was a hard thing to struggle with in the beginning, not knowing who. But then I eventually reached the point of saying, ‘well it doesn’t matter who, it matters how you move forward now.’”
Through talking with others living with HIV, over time Middleton was able to move on. He initially went to seek out a professional psychologist or psychiatrist, but even with strong insurance, the best they could provide him with was a county clinic.
“The lady seemed like I was just some box to be checked off like, ‘Oh that’s great, you’re following your doctor’s orders,’” Middleton said. “’Is this what a mental health care system is like?’”
Due to his poor experience, Middleton decided he wanted to go right to the source and talk to patients living with the same disease. Middleton ended up searching out support on his own, which led him to connect with HIV activists who pointed him in the direction of an online support group on Facebook.
Within this group, other HIV-positive individuals told Middleton that finding out who infected him was not going to help and would only create negative energy. After talking to several people who all gave the same advice, Middleton made the decision to let it go and move on.
When it came to treatment options, Middleton was given a choice: either wait and see or start a medication regimen right away. His viral load at the time was 28,000 and his C4 count was in a healthy range.
Middleton’s brother advised him there are treatment options that require only taking 1 pill per day. Middleton’s doctor immediately prescribed him Atripla, with caused debilitating side effects.
“I would get nausea like an hour or 2 after I took the pill,” he said. “I would be like throwing up for an entire hour, like violently throwing up. My head would buzz; it felt like I had a beehive in my head. It was constantly buzzing, like my brain had been dropped in acid. I had bad nightmares to the point where I would wake up screaming, thinking about my diagnosis, thinking about when I told my ex-girlfriend.”
The side effects became so unbearable that he could no longer take the medication.
“Eventually, it got to the point where I was like, ‘look if you don’t change me to something else, I’m going to stop taking this stuff because it is going to drive me nuts,’” Middleton said. “I would rather live and take my chances then be on this stuff.”
In January 2014, Middleton was switched to Complera, and thus far the side effects have been minimal.
“I have a little bit of rapid weight gain and some chronic fatigue that I deal with, but it’s nothing too big,” he said. “Coming from Atripla, it’s been life changing. I don’t have the amount of side effects that I did before.”
Since the FDA approval of emtricitabine, rilpivirine, and tenofovir alafenamide (Odefsey), which has a new version of tenofovir, Middleton is thinking of making a switch.
“The new version of tenofovir, TAF instead of the TDF, is supposed to be better for your kidneys and bones and such,” Middleton said. “I’ve talked to my doctor about switching to that, so it’s possible I might switch. I mean, it’s going to be essentially the same medication.”
Middleton had had an undetectable viral load since one month of his diagnosis, and has a healthy CD4 count in the 8 or 9 hundreds. He has also been fortunate enough to have insurance that covers his medication.
“I have Blue Shield, so they’re pretty good at covering that kind of stuff, but the copays were sometimes still pretty expensive,” Middleton explained.
Middleton’s copays for Atripla were as high as $100, but with the Gilead copay assistance card his $25 copay for Complera is fully covered.
At this time, Middleton is a part of approximately 50 HIV groups on Facebook, but is most heavily involved in 2 groups that he manages. He also has a blog called Positive Hope that he uses to help with his advocacy efforts.
“I named my blog Positive Hope because hope is everything for me,” Middleton said. “It’s really believing that tomorrow is going to be a better day, and if today sucks, tomorrow is going to be better.”
His goal is to help provide support for others with HIV, since it was something he was seeking when he was first diagnosed.
“I know how crucial those first few hours, those first few minutes, those first few days and weeks after can be,” Middleton said. “Being able to make a difference in someone else’s life and be there for them during that time, that to me is everything. So my advocacy message is that people never lose sight of hope because there is life beyond HIV.”
Although Middleton has gained a lot of support through his advocacy journey, he isn’t immune to the stigmatism that surrounds the disease.
“I was very active and very open about my status from the very get-go,” Middleton said. “I’ve always been a very extroverted person, so I was kind of involved in activism after the first few months of being diagnosed, and that’s when I started to experience it.”
After posting videos on YouTube about his HIV-positive status, Middleton was met with several hateful and horrible comments, including comments littered with LGBT slurs.
“I have always looked at it as, if you have that sad of a life that you have to try to put other people down to make yourself feel better, then that’s pretty sad,” Middleton said. “I pray for that person that hopefully one day they’re at a place of peace that they don’t have that.”
Internet bullies aren’t the only place where Middleton was faced with hate.
“My girlfriend, she’s negative, and everybody knows my status,” Middleton said. “We work in the same industry and other people will say, ‘are you dating Josh from that company that has AIDS?’ Stuff like that, and that did get to me a little bit more.”
Middleton said support from his loved ones helped him block out the hate and negative comments.
“I can try to educate people if they want to be educated, but at the end of the day some people don’t want to be educated. Some people just want to hurt other people,” Middleton said. “No one has walked in my shoes. I don’t have to prove my sexuality to you. I don’t need to prove anything to you. I’m just a human being living with it. The world is a cruel place at times. I just kind of have to look at it and look at the good in people.”
Middleton urges those who are newly diagnosed to understand that HIV will not ruin a person’s life.
“HIV isn’t the end of the world. HIV is actually just the beginning,” Middleton said. “It’s an opportunity that’s presented to you, and you can either live a bitter and angry rest of your life and blame everybody else for the struggles, or you can get your power back and take control of your life, and live it to the fullest.”
What makes the entire struggle worthwhile is hearing from the people Middleton has had a positive impact on.
“When I hear from people who are like, ‘hey you changed my life’ or ‘hey you really helped me, thank you so much,’ then that makes up for it all,” Middleton said.
Currently, Middleton is working on studying to be a pilot, has a full-time job, is going back to school, and is in a happy relationship. He hopes his life reflects an attainable goal for others fighting the same disease.
“You can reach things despite your status,” Middleton said. “You can find someone who loves you despite your status, you can find all of that stuff, for me that’s big. Showing that there is light beyond HIV, that just because a diagnosis happens, doesn’t mean you have to stop living life, but you have to start living life. It’s living it to the fullest.”