Real Stories from Real People Living with HIV in Northeast & North Central Pennsylvania

In honor of World AIDS Day, we reached out to people living with HIV to get their stories. Here’s what they said:

What is the biggest hurdle you’ve overcome since receiving your HIV or AIDS diagnosis?

  • “Acceptance of self. I was engaging in risky behavior at the time, and when I received the news it was death sentence. I was so devastated and overwhelmed that I was admitted to the behavioral health unit at the hospital. The guilt and remorse were so intense that I relapsed into risky behavior. I overcame the fear. It was a long process. My wife stayed with me through it all. Eventually ‘the lightbulb went on.’ My life changed. I became optimistic about the future because of my connection with God and my purpose here in this life.”
  • “Involved happily with a partner I trusted, I tested positive for HIV and AIDS. The trust was broken. I felt betrayed, lied to, and have had trouble trusting since that time. That’s the biggest hurdle I’ve had to overcome. Having relationships. Talking to partners is difficult and I just don’t indulge to avoid romantic relationships since those early days, there has been no physical intimacy.”
  • “The biggest hurdle I’ve overcome since my HIV diagnosis is having to learn to live without being ashamed of my status and knowing that it’s just a medical diagnosis.”
  • “The biggest hurdle that I was forced to overcome would be loneliness. I consider myself to be very outgoing, funny, witty, and genuinely caring towards others. Sometimes I feel that people cannot see past my status. They see me for my HIV, instead of for who I am as an individual who also happens to live with HIV.”

What do you think is the biggest misconception about living with HIV/AIDS?

  • “I feel that the general public has a wrong concept of the disease. From my experiences people look at those who are infected as ‘low lifes.’ They judge you because you got infected, they avoid you because they think they can ‘catch it’ just by being around you. That you are the disease. I want people to know that I am not the disease. I am a person just like them. The only difference is that I am battling a disease they don’t have. It’s a disease I will not give them; certainly not just by being friends. The judgements are unfair and hurtful.”
  • “The biggest misconception about living with HIV/AIDS is that people still think this is a debilitating condition. As long as you’re willing to learn good habits and adhere to your medications, you can live a long and health life.”
  • “People are misinformed about the diagnosis. They don’t realized that it isn’t dangerous to be around people with HIV in their daily life. People’s information level has not kept up with the way things are not. We are not back in the Liberace and Rock Hudson era. People are more accepting than they were in the ‘80s, though our rural area is less informed than many urban areas. I want people to know that things have changed. It’s OK to be friends, even partners, with someone who has HIV, especially if they are undetectable. We are just like you except we have this medical problem. I have lost friends because they were afraid. They didn’t want to be reminded that it could happen–even to them.”

What piece of advice would you give to someone receiving an HIV/AIDS diagnosis today?

  • “My best advice to those newly infected is to know that they are not alone. It is really helpful and empowering to network with others who have the disease or are working with the disease. That they are not the disease.”
  • “To anyone newly diagnosed, I want them to understand that the technology and treatment has changed so much since the earlier days. I want them the know that the new medications are excellent and that their infection will quickly become undetectable is they faithfully follow their doctor’s instructions and take their medications as directed.”
  • “Some advice I would give for someone who is newly diagnosed is to make sure you have a strong support system. Whether that be trusted friends, family, or an outside source. Positive reinforcement helps greatly with your mental health along with your physical health.”
  • “If anyone today were diagnosed with HIV, I would tell them, ‘It’s not the end of the world,’ and it does not have to be a defining factor in your life.”

Have you been impacted by stigma since your diagnosis?

  • “Stigma still exists. People are afraid that others will treat them differently. I don’t tell people at work, but there is gossip, which hurts feelings and relationships. I had a coworker who was also infected and who lived in constant fear of being affected at work, but I have already disclosed to my employer who was very understanding.”
  • “I am aware of stigma because I hear what people say—even friends who don’t know I am infected—and it hurts. The only ones who know are my medical care providers, with whom I am scrupulously honest, and my family. My family has been accepting and some of them are actually supportive so I do have that back-up and am grateful for it.”
  • “I can’t trust some of the people I have regarded as friends. Friends have turned their backs on me and spread rumors about me. Their betrayal has hurt deeply at a time when I needed help and support. Instead I got stigma. I don’t tell people anymore.”
  • “I have been impacted by stigma in many instances. I don’t want to go into details, but when this happens I feel like the person doesn’t have an understanding of the virus. This is where I step in and respectfully speak for myself and educate the person about information and facts about the HIV virus.”

What is one thing you would like those not living with HIV/AIDS to understand about living with it?

  • “I see that many misconceptions still exist about HIV. People think they can tell when somebody has it. People are still back in the day when they think people with HIV look sickly. They are ignorant of the realities of living with HIV today. I would like people to know we are just like the person who has cancer—fighting a nasty disease. Don’t look down on us.”
  • “I want people who do not have HIV to know that there’s no difference in your life or who you are when you have HIV. I would also like them to understand the medical challenges those who are infected face.”

Dr. Jeffery T. Kirchner, MD heads our medical clinics and was just beginning his medical career when the first cases of “AIDS” were reported. Read more about his experiences as a doctor working HIV positive patients below:

“The first drugs developed such as AZT, DDI or D4T provided short-term benefits but ultimately failed patients due to drug resistance. Then in 1995 and 1996 when Protease Inhibitors came out – to see the clinical improvements in my patients who were just months away from death, was nothing short of amazing. Within a relatively short period of time patients with very advanced disease or what was called “full blown AIDS” began getting better. They regained weight and began looking healthy again. Some doctors referred to this as the “Lazarus syndrome”. Fewer of my patients were in the hospital and I was going to fewer funerals.

“I always emphasize that HIV is no longer a fatal disease and that we have very effective therapies to keep them healthy. That being said – I often tell patients this is the same disease, caused by the same virus – which has taken the lives of millions of people and, without treatment, HIV infection ultimately leads to AIDS and death. I like to emphasize that HIV is very treatable but remains a chronic condition (until we find a cure).”

When asked what lessons he found himself learning through his years of providing care for patients living with HIV, Dr. Kirchner responded, “This is a challenging question.  My 30+ years as a physician caring for patients with HIV has taught me many things, this includes dealing with sadness and loss, the scourges of mental health and addiction, and the frustrations with patients who cannot or will not take care of themselves. I also have an overall sense of hope and optimism due to many patents I have gotten to know and care for, witnessing them survive the worst plague in modern medical history.  As my medical career winds down – I would love to see an end to the HIV epidemic as we know it (known as “Getting to Zero”) and ultimately find a cure.”

Thank you to all those who shared their stories with us, and to Dr. Kirchner for all the work he does.

If you or someone you know is living with HIV and could us help, please feel free to contact us at: 570-829-2700, option 1.