HIV is Not a Death Sentence? Give Me a Break!
I swear if I hear “HIV is no longer a death sentence” one more time I will end up screaming. Our HIV prevention strategies targeting young gay men are failing. The prevailing belief is that you just pop a pill once a day and life goes on...but it is so much more complicated than that. HIV can degrade the mind and spirit of a person just as much, if not more so, than it does the physical immune system. Death is not the only result of HIV, it is simply the final result if it is diagnosed late and managed poorly, as is the situation for many people.
HIV and the risky behavior that can cause it’s transmission does not happen in a vacuum. Contracting HIV is the end result of a domino effect of mental, societal, and psychosocial factors that when taken together can put one in a position of great vulnerability. It is unrealistic to think the solution to transmission is “just wear a condom” or “go on PreP”.
Neither of these have been successful or widely accepted “solutions”. They look great on paper but in practice and acceptance it has shown to be anything but.
For me, the greatest challenge of living with HIV has been mental and emotional. A high percentage of people with HIV also deal with depression, and that certainly includes me. What led me down the path to HIV was long and winding in reality, but in hindsight it looks like a straight line towards the inevitable.
I was reeling from an 8 and half year relationship, my first relationship. It was my first failure in life and it hit me like a tsunami. I had no coping mechanism to deal with the ending of a relationship that was such a huge part of my identity. I had spent my 20’s and the start of my 30’s with the same guy, in a relationship that was not healthy, though when I was in the middle of it all I just thought that is how things were supposed to be. It took a long time for me to realize things were not healthy with us. And even when I came to that realization there was a very huge part of me who felt like I was giving up too soon, that I could have done more to make things better. I still feel that way today.
My emotions were all over the place, some of which I could not even really describe. I was utterly devastated, even though I was the one to leave. Instead of dealing with those emotions or even talking about it with my friends, I chose instead to drown them in methamphetamine and alcohol. My lesson: open up to people; don’t be afraid to lean on people. There are no points earned from relying on pride.
I left Chattanooga and moved back home to Maryville, TN. I thought I was doing something empowering but I was really running from my problems. I was hiding behind the newness of moving back to my old pre-relationship life. But...everything was different. Everyone from back home had moved on, and I was alone, with no friends. I tried going to bars (people still did that back in 2007) and was never successful at meeting people. Cliques were already formed and there was not any room in them for me. I was too old for the twinks and not established enough for guys older than me. It was a rude awakening to realize the life I thought I would have when I moved back home was not to be. My lesson: do not hold onto an idea of how you think things should be; instead, work with the reality that confronts you and adapt to new circumstances rather than being defeated by them.
I relapsed soon after moving home, once again because I didn’t have effective coping strategies to deal with my emotions. I became very sick...from the drugs, from the HIV multiplying in my body, either of those or both of those. When I was diagnosed with HIV, I stopped using drugs, not because it was the right thing to do but because I was just simply too sick. Even the false promise of meth was not enough to energize me.
My HIV diagnosis was a devastating diagnosis, it hit me hard and, once again, I did not cope well. I withdrew from the world. I was a zombie walking around, not feeling, not aware of much around me. It was a very grey and foggy time. And again, I did not cope well with how I was feeling.
People believe HIV is a disease of the immune system but is is just as much a disease of the heart and the mind as well. Every day it is always in the back of your mind. Every cough becomes suspect, every mole looks suspicious. Every odd pain makes you fear the worst. One becomes a hypochondriac by default. At least that is how it has been with me.
And at the same time I worry about my physicality, there is the craziness of worry, of fearing what will end up happening to you, or fearing if someone finds out and judges you. I was fired from my job once I came out to my supervisor with my HIV diagnosis. That taught me to hide it from everyone at any job I had, because I feared being fired again. Once again my default coping mechanism was built on hiding and keeping a secret, which eventually ulcerates inside of you, causing scar tissue to form on your soul.
Eventually I came to terms with my HIV and I was able to tell a few trusted coworkers. It felt better not being alone with this huge thing anymore; my soul-ulcer began to slowly heal. My current employer knows about my HIV, as I had to enlist her help on an insurance issue at work. But...a part of me always wonders and worries that maybe my disclosure will come back to haunt me. My lesson: I am not sure yet. Part of me believes disclosure is a good act, in theory, though I will always fear the repercussions. I am still working on having faith in employers in this regard.
So, for me, HIV has been a lot more than just taking a pill every day. It is worry, it is doubt, it is feeling disconnected from the gay community at large. It is addiction. It is depression. It is struggling every single day to not allow all of those things to impact me to such a degree where I use drugs again or commit suicide.
One thing I have learned is that there will always be chaos in life, there will always be “bad” things that happen. Sometimes there will be some very bad things that happen, like losing your mother, which shakes you to your core and makes you not want to live anymore. I am having to remind myself, hourly at times, that this too will pass, that nothing good or bad lasts forever so I just have to tough it out a little while longer. I have found coping mechanisms that help greatly: music, writing, reading. These things keep me holding on just a little while longer. I do not worry about the little things anymore, as that is a waste of time and energy. There are too many big things to worry about (will I get my meds this month, will I still have a job, do we have enough money to pay bills, how will I ever cope with losing my mom) to fill up my time.
HIV may not be a death sentence, but it certainly is not a walk in the park either. So please...let’s all agree to banish that sentiment for good.
HIV and the risky behavior that can cause it’s transmission does not happen in a vacuum. Contracting HIV is the end result of a domino effect of mental, societal, and psychosocial factors that when taken together can put one in a position of great vulnerability. It is unrealistic to think the solution to transmission is “just wear a condom” or “go on PreP”.
Neither of these have been successful or widely accepted “solutions”. They look great on paper but in practice and acceptance it has shown to be anything but.
For me, the greatest challenge of living with HIV has been mental and emotional. A high percentage of people with HIV also deal with depression, and that certainly includes me. What led me down the path to HIV was long and winding in reality, but in hindsight it looks like a straight line towards the inevitable.
I was reeling from an 8 and half year relationship, my first relationship. It was my first failure in life and it hit me like a tsunami. I had no coping mechanism to deal with the ending of a relationship that was such a huge part of my identity. I had spent my 20’s and the start of my 30’s with the same guy, in a relationship that was not healthy, though when I was in the middle of it all I just thought that is how things were supposed to be. It took a long time for me to realize things were not healthy with us. And even when I came to that realization there was a very huge part of me who felt like I was giving up too soon, that I could have done more to make things better. I still feel that way today.
My emotions were all over the place, some of which I could not even really describe. I was utterly devastated, even though I was the one to leave. Instead of dealing with those emotions or even talking about it with my friends, I chose instead to drown them in methamphetamine and alcohol. My lesson: open up to people; don’t be afraid to lean on people. There are no points earned from relying on pride.
I left Chattanooga and moved back home to Maryville, TN. I thought I was doing something empowering but I was really running from my problems. I was hiding behind the newness of moving back to my old pre-relationship life. But...everything was different. Everyone from back home had moved on, and I was alone, with no friends. I tried going to bars (people still did that back in 2007) and was never successful at meeting people. Cliques were already formed and there was not any room in them for me. I was too old for the twinks and not established enough for guys older than me. It was a rude awakening to realize the life I thought I would have when I moved back home was not to be. My lesson: do not hold onto an idea of how you think things should be; instead, work with the reality that confronts you and adapt to new circumstances rather than being defeated by them.
I relapsed soon after moving home, once again because I didn’t have effective coping strategies to deal with my emotions. I became very sick...from the drugs, from the HIV multiplying in my body, either of those or both of those. When I was diagnosed with HIV, I stopped using drugs, not because it was the right thing to do but because I was just simply too sick. Even the false promise of meth was not enough to energize me.
My HIV diagnosis was a devastating diagnosis, it hit me hard and, once again, I did not cope well. I withdrew from the world. I was a zombie walking around, not feeling, not aware of much around me. It was a very grey and foggy time. And again, I did not cope well with how I was feeling.
People believe HIV is a disease of the immune system but is is just as much a disease of the heart and the mind as well. Every day it is always in the back of your mind. Every cough becomes suspect, every mole looks suspicious. Every odd pain makes you fear the worst. One becomes a hypochondriac by default. At least that is how it has been with me.
And at the same time I worry about my physicality, there is the craziness of worry, of fearing what will end up happening to you, or fearing if someone finds out and judges you. I was fired from my job once I came out to my supervisor with my HIV diagnosis. That taught me to hide it from everyone at any job I had, because I feared being fired again. Once again my default coping mechanism was built on hiding and keeping a secret, which eventually ulcerates inside of you, causing scar tissue to form on your soul.
Eventually I came to terms with my HIV and I was able to tell a few trusted coworkers. It felt better not being alone with this huge thing anymore; my soul-ulcer began to slowly heal. My current employer knows about my HIV, as I had to enlist her help on an insurance issue at work. But...a part of me always wonders and worries that maybe my disclosure will come back to haunt me. My lesson: I am not sure yet. Part of me believes disclosure is a good act, in theory, though I will always fear the repercussions. I am still working on having faith in employers in this regard.
So, for me, HIV has been a lot more than just taking a pill every day. It is worry, it is doubt, it is feeling disconnected from the gay community at large. It is addiction. It is depression. It is struggling every single day to not allow all of those things to impact me to such a degree where I use drugs again or commit suicide.
One thing I have learned is that there will always be chaos in life, there will always be “bad” things that happen. Sometimes there will be some very bad things that happen, like losing your mother, which shakes you to your core and makes you not want to live anymore. I am having to remind myself, hourly at times, that this too will pass, that nothing good or bad lasts forever so I just have to tough it out a little while longer. I have found coping mechanisms that help greatly: music, writing, reading. These things keep me holding on just a little while longer. I do not worry about the little things anymore, as that is a waste of time and energy. There are too many big things to worry about (will I get my meds this month, will I still have a job, do we have enough money to pay bills, how will I ever cope with losing my mom) to fill up my time.
HIV may not be a death sentence, but it certainly is not a walk in the park either. So please...let’s all agree to banish that sentiment for good.
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