I came across the quote "It's no fun to have HIV even though it's viewed as a chronic, controllable disease. It means being wedded to the health system." A man by the name of Phil Berger is credited as saying this.
I thought about this quote and how it applies to me. There have been many times I have felt guilty about contracting HIV, especially when I was first diagnosed. I've spent a lot of my life putting myself down. There has been many times when I take my medication that I think to myself, I am a burden on the health care system. Where I live, my medication is paid for by the government. Every cent. I know I am very fortunate that my medication is paid for, but sometimes it makes me feel guilty.
I have lost count how many times a friend, family member or doctor has said to me at least it's not a death sentence. I know when someone says this to me, they say it as a sign of support. But at the same time I feel like they are downplaying my illness. This says more about me and my insecurities and issues with the disease. To me it's a big deal. I have this disease that is trying to kill me. It's roaming around in my bodily fluids, attacking my body trying to destroy my immune system. I take these medications every day and everyday I have diarrhea. When I first started taking HIV medications, the first week was hell. I was extremely nauseated and vomitting. It was horrible. It was like the worst flu I have ever had.
A question needs to be answered. Did I do it to myself? Is it my fault I got HIV? Some people would say that's an easy question to answer. They would simply say yes. Yes it's your fault you got HIV. You knew that having unprotected sex could lead to you having HIV. You are the one who let the guy insert his penis in you without a condom. Do I deny that? No I don't. I did know that having unprotected sex could lead to contracting HIV. I did let the guy insert his penis in me without a condom. I didn't ask him what his status was. Other questions need to be asked. Why would I have unprotected sex, knowing I could contract HIV? Shouldn't it be human nature to protect oneself? If so, why would I risk getting HIV?
I didn't have any self worth. If I had no self worth why would I care about getting HIV? I didn't care about myself, didn't love myself. I have battled major depression throughout most of my life. As every year passed, each bout of depression got worse. As the darkness inside me grew, the more destructive things I did to try and forget about those feelings. I would eat a lot of fast food to try and make the bad feelings go away. I would eat McDonalds, KFC, Taco Bell; as long as it was greasy I would eat it. The cravings I would get for fast food while I was depressed were intense. I felt like an addict. I would take that first bite of food and instantly I would feel better. The salt, grease and sugar would give me a temporary high. A high that didn't last very long. I would go home and go to bed feeling disgusting. These feelings would follow me to the next day. I needed to get rid of these feelings so I would go and have sex.
When I first started being promiscuous in high school, I would mainly just have oral sex. Once in awhile I would have anal sex. If I did have anal sex it was always with a condom. As the years went on, once in awhile I would have sex without a condom, but I would tell the guy he couldn't ejaculate inside me. Then that didn't give me the high I need to mask my feelings, so I started letting the guys ejaculate inside me. Sometimes I would freak out that I might get HIV, but normally I wouldn't. I didn't give a fuck, I didn't like myself, a lot of times I hated myself. This was my punishment. I never thought to myself, I hope I get HIV, or I am going to have unprotected sex to get HIV. But deep down I thought to myself, if I do happen to get it, I would deserve it.
After awhile the high was weakening, so I was having sex with more and more guys, more often. I would meet guys from websites online and I would go to the bathhouse. I would try and have sex with as many guys as possible. I needed to keep the high going. When I was feeling disgusted with myself for having unprotected sex, I would go and eat fast food. When I would feel disgusted with myself for eating so much, I would go and have sex. It was a vicious cycle I was caught in, I couldn't get out. I couldn't tell anyone, because I was too embarrassed, too ashamed. HIV has a stigma attached to it, so do mental health issues. I didn't feel like I could tell anyone, I would be judged, I would be hated. No one would understand. So I kept it all in. Because I kept it all in I kept acting out in destructive ways.
Why didn't I have any self worth. For me to answer that question I need to look back at my childhood. Just a few months ago I wouldn't have been able to answer this question. After spending four months in an intensive group therapy program I can answer it. My parents fought, they fought a lot. I remember when I was seven, I was in my room sleeping. I woke up to my mom and dad yelling at each other. I could hear my dad threatening to kill himself. I heard my mom yell to my sister to hide the knives. Then I heard my mom yell, call the police. My sister did call the police, apparently the SWAT team showed up. I was upstairs all alone, frightened not understanding what was going on. I have another memory from when I was seven. It was summer time and the neighbourhood kids and I were having a water fight. One of the neighbours, a grown man joined in and was shooting us with a water gun from his back door. He kept running inside and closing the door so we couldn't get him wet. Well being seven I thought I was all smart, and decided to engage the lock on his door when he wasn't looking so when he closed the door behind him so we wouldn't get water in his house, he would be locked out so we could get him wet. I didn't think about how he would get back inside - I was seven. Well he tried to go back inside and the door was locked. He lost it. He came out of the back yard, started yelling and yelled who the fuck locked my door? The kids pointed at me. He came at me, grabbed me and started walking towards the managers place of the townhouse complex we lived in. I was scared and I was screaming and crying. I kept asking him to let me go, he was holding me so tight it hurt to breathe. He told me to shut the fuck up and slapped me across my face and side of the head. I told him if he put me down and let me walk I would stop crying. He put me down and I made a break for it. I didn't get very far, he grabbed me and hit me again. My friends ran to my house and got my dad. My dad came flying around the corner. My dad told me to go home. Surprisingly my dad somehow kept his temper in check and didn't kill him. My dad called the police and I had to tell them what happened. It turned out the guy was drunk. After that it was never spoken of. My mom and dad never asked me if I was okay, it just was never spoken of. My mom and dad split up when I was eight. My sister rebelled my getting into crime. My brother dealt with it by getting involved in sports. I was the forgotten one. My mom worked all the time, because she was depressed. She would go to work at five in the morning and not get home till eight or nine at night. I basically raised myself. It was very lonely. I never had anyone to talk to, I never had anyone teach me how to deal with my feelings properly. I was bullied a lot in school. The boys would take my clothes and put them in the shower so I would have to walk around in my gym clothes all day. The one time I tried to tell my mom what was happening the response I got was "other kids have it worse. It can't be that bad." So I held my feelings in, no one cared. My teachers knew this was happening, they didn't do anything. No one cared, why should I? When I was twelve I was raped in a public washroom by an older man. I kept that in, again why would I tell anyone? No one would probably believe me. There are many other traumatic events that have happened but the point is, my childhood had a huge impact on who I am today. So when someone says how could you be so stupid for contacting HIV, you should know better? My response is going to be "no I shouldn't have known better. How could I have known better. No one taught me any different. No one was there for me. Going through the group therapy program and looking back at my childhood I am not shocked that I contracted HIV. I am shocked I didn't contact any other diseases, I am shocked I didn't develop a drinking problem or a drug problem to cope.
My point is contracting HIV is not a black and white issue. There are a lot of grey areas. A lot of it comes down to circumstance and mental health. There will never be an easy answer, but if we never talk about it honestly and openly then we will never find an answer. This has been extremely difficult for me to write. Even though my blog is anonymous, I still find it embarrassing to admit some of these things. At the same time, it has been therapeutic and if it can just help a few people by sharing these intimate details then that makes me happy. It's funny, I didn't originally plan for this post to be so long and so detailed. I originally just meant to write about what the quote meant to me and how I feel like a burden on the healthcare system. It's interesting how a simple quote was able to bring up so much for me. Thanks for listening.
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