You're not going to die.
The good news is you're not going to die.
You are going to be just fine.
As long as you realize you're not going to die.
People can live long healthy lives with HIV.
You can survive this like the millions before you.
In one way or another in various tones from forced to cheer to seriousness, at four out of five of my initial appointments after learning that I had HIV, someone made it a point to tell me that I wasn't going to die. People who were trying to give me resources made sure to remind me I wasn't going to die, and that I was looking at a very different disease than some years ago. I was told about medications that would not only help me live longer, but that were kinder, gentler medications than ones from past years. Rather than finding that comforting, it actually only served to heighten my anxiety and worry me more. If someone is trying so hard to convince you of something might the opposite actually be true? Are they trying to convince you or themselves? Who the hell lives a fulfilling life worried about not dying? I've always believed that if something was a fact, or true, I didn't need to spend a lot of time trying to convince anyone of it. It just IS. You can believe it or not.
Let's say I believed them. I'm not going to die, but even if I take you at your word, how am I supposed to live? No one was telling me that. Other than to tell me to take my medication every day, no one was going out of their way to tell me how to LIVE with HIV. I have always been a person that believed life is not just meant to be survived or endured. I'm not going to die but how do I do daily life? Please, do tell, how exactly is everything going to be just fine? I have this… this...what? Virus? Condition? Disease? If I can't even decide what to call it, how do I live with it? How do I thrive? Was someone going to tell me how not to die a little everyday living with uncertainty and a vague sense of shame? Somehow, this idea of "not dying" wasn't comforting in light of figuring out how to function with fear and social stigma. I still knew people that were worried about getting AIDS from kissing, let alone understanding the difference between HIV and AIDS. How do I live with that?
You know how you get an idea in your head and can't get it out? Sometimes it's anxiety manifesting. Sometimes it's there as a distraction from a thing you don't want to deal with on a subconscious level. This concept of not dying vs. living became a combination of those two things. Anxiety as I tried to figure out the ins and outs of HIV as a disease and a distraction from actually dealing with having it. It was maddening and distracting. Gradually, I learned more about the how and what of HIV/AIDS. I started learning that how I felt about myself within my status had everything to do with how my loved ones and potential loved ones felt about my status. I was in the beginning stages of exploring who I was within my disease and process. Discovering what I was going to allow it to change about me. Shoring up the weak places I found, reveling in the strong, positive ones. I decided to go back to school and become a nurse. I got used to taking medications daily. I studied in school. I dealt with and got help for my depression. Started redirecting emotions and getting rid of guilt and shame. I was very busy not dying. At one point I had to change my HIV medications, and went through a stage where I felt resentful towards having to take pills every day to stay healthy. It felt like my pill was taunting me a little. "The good news is, as long as you take me you'll be just fine." Or "Take three every morning, and live a long healthy life." This was that reminder (as if I had forgotten), that I was not going to die. Thank goodness I got past that stage fairly quickly. Life was doing its thing. Ebbing and flowing. Bills still had to be paid. Relationships had to be navigated. People died, and babies were born. I started dating again. Like a lot of people, I forgot to go to the grocery store and occasionally only washed one sock when doing laundry. I even got busy enough to forget to be distracted by not dying.
One day, I was talking to a patient. He was newly diagnosed, and I was trying to encourage him, and let him know he was going to be okay. I made it a point once I became a nurse and starting working with HIV patients to not say "You aren't going to die". I always express the sentiment, but I don't use those words. It gets tricky. I don't disclose my status to everyone. Not out of shame, but just because not everyone needs to know, or it's not appropriate for them to know. However, when I feel like it matters or a person needs to hear it, I disclose a bit of my journey, sharing where I am with my status. In this particular case, he was crying and he said to me "How am I supposed to live?" In that moment, without fanfare and horns, without lightning or rainbows, I realized you just live. I had been living for quite some time without worrying about my HIV. I was just living life. Once I educated myself on managing my status, and more importantly realized I was still me, I forgot to live worried about trying not to die. No tricks, no gimmicks, no blueprint. That's what I told him. What I would say to you. Remember who you are, or figure out who you want to be. Take care of your body and love yourself. Know that how you feel about yourself, will affect how others feel about you. Not only are you not going to die, you can live amazingly well.
This blog was originally posted in "The Kick ASS Manual".