HIV Makes Me Sick!
In the early days of the HIV epidemic a person’s physical appearance very closely mirrored the internal infection. Nowadays, the physical impacts of HIV are mostly internal, be they physical or emotional or some hybrid of the two. I may not think about my HIV every day but I definitely feel it every single day. Not a day goes by that I am not nauseated at some point, or that I lose my desire to eat or I am fatigued due to poor sleep. Or I often refrain from eating because of the nausea, then force myself eat, and then feel sick from eating. It is definitely not the most fun sort of roller coaster.
Often my eating habits mirror those of someone with bulimia minus the forced vomiting. I feel as though I lose and gain the same 10-15 pounds over and over again. Incidentally, my perception of my body changes as often as I gain and lose those pounds. Intellectually I know it is silly to tie my sense of self-worth to my body, vain even, yet the fact remains that people, especially gay men, judge us by the way we look.
HIV is not just a disease of the body. It is a disease of the mind as well, impacting emotions as well. I feel bad about something, either from a physical issue (such as feeling sickly on most days) or a mental issue (feeling fat because I am bloated or I am on an up phase on my weight), but then I also feel bad about feeling bad. I tell myself “oh stop, you are being a baby for being in the dumps” which then makes me feel ashamed for feeling bad and feeling bad about feeling bad. This is the second roller coaster of having HIV.
That is how it is with me. And for me, it is hard for me to deal with that because I often feel like I am just being weak and whiney. I often feel like I should just suck it up and deal with my issues, or I feel guilty for having issues at all. My partner is HIV- and he just simply does not get it. He doesn’t understand it because he can not see it. He does not understand why I am always nauseated or why I defer the dinner he so thoughtfully cooked, and he takes it personally when I can’t eat when he thinks I should. He also does not understand why I am fatigued most of the time. He thinks I am just being lazy or unmotivated. And then I feel guilty, and wham, bam, boom now I am feeling secondary shame due to the primary physical crap I am experiencing.
But then I remember the clinical reality of HIV and its impact on the gastrointestinal tract. HIV causes permanent and irreversible changes to the structure and function of the gastrointestinal tract. Inside the gastrointestinal tract there is what is called a mucosal barrier, a function of the immune system and digestion that aids in the protection against pathogenic organisms. HIV thins out this barrier, which causes inflammation, increased permeability, which in turn contributes to diarrhea and a decrease on nutritional absorption. Vitamin B12, essential for energy, is particularly affected when HIV damages the gastrointestinal tract. The immunologic changes HIV causes in the gastrointestinal tract are so severe, even in those on HIV treatment, that gastrointestinal activity has been shown to be a better predictor of HIV disease progression than the viral load test that is the common standard of HIV evaluation.
Incidentally, the gastrointestinal tract is tightly woven into our central nervous system as well. One only has to be worried before a job interview or a big speech to know how stress can make you present physical symptoms. One only has to feel butterflies when seeing your beloved from afar to know what this connection feels like. But it goes both ways. The gastrointestinal tract is a vital location of the production of serotonin, a chemical that makes us feel good and creates a feeling of well being. When HIV damages the gastrointestinal tract it also bombs these serotonin factories. In this way, HIV can be thought of as the Nazis and our intestines represents London as it is being bombed. It is not difficult to understand the connection between HIV and a higher rate of depression, even absent the societal stigma involved.
But, thankfully I have a great HIV doctor and a great psychiatrist, both of which push me to live and thrive. With HIV, taking a pill every day is not enough, at least it isn’t for me. Without the support of my medical team I would be in much worse shape, even if I was faithful in taking my daily pills (which I am, 99% of the time). That is why it is so important to find a doctor with whom you feel comfortable. There is no sense struggling alone when help is out there.
Often my eating habits mirror those of someone with bulimia minus the forced vomiting. I feel as though I lose and gain the same 10-15 pounds over and over again. Incidentally, my perception of my body changes as often as I gain and lose those pounds. Intellectually I know it is silly to tie my sense of self-worth to my body, vain even, yet the fact remains that people, especially gay men, judge us by the way we look.
HIV is not just a disease of the body. It is a disease of the mind as well, impacting emotions as well. I feel bad about something, either from a physical issue (such as feeling sickly on most days) or a mental issue (feeling fat because I am bloated or I am on an up phase on my weight), but then I also feel bad about feeling bad. I tell myself “oh stop, you are being a baby for being in the dumps” which then makes me feel ashamed for feeling bad and feeling bad about feeling bad. This is the second roller coaster of having HIV.
That is how it is with me. And for me, it is hard for me to deal with that because I often feel like I am just being weak and whiney. I often feel like I should just suck it up and deal with my issues, or I feel guilty for having issues at all. My partner is HIV- and he just simply does not get it. He doesn’t understand it because he can not see it. He does not understand why I am always nauseated or why I defer the dinner he so thoughtfully cooked, and he takes it personally when I can’t eat when he thinks I should. He also does not understand why I am fatigued most of the time. He thinks I am just being lazy or unmotivated. And then I feel guilty, and wham, bam, boom now I am feeling secondary shame due to the primary physical crap I am experiencing.
But then I remember the clinical reality of HIV and its impact on the gastrointestinal tract. HIV causes permanent and irreversible changes to the structure and function of the gastrointestinal tract. Inside the gastrointestinal tract there is what is called a mucosal barrier, a function of the immune system and digestion that aids in the protection against pathogenic organisms. HIV thins out this barrier, which causes inflammation, increased permeability, which in turn contributes to diarrhea and a decrease on nutritional absorption. Vitamin B12, essential for energy, is particularly affected when HIV damages the gastrointestinal tract. The immunologic changes HIV causes in the gastrointestinal tract are so severe, even in those on HIV treatment, that gastrointestinal activity has been shown to be a better predictor of HIV disease progression than the viral load test that is the common standard of HIV evaluation.
Incidentally, the gastrointestinal tract is tightly woven into our central nervous system as well. One only has to be worried before a job interview or a big speech to know how stress can make you present physical symptoms. One only has to feel butterflies when seeing your beloved from afar to know what this connection feels like. But it goes both ways. The gastrointestinal tract is a vital location of the production of serotonin, a chemical that makes us feel good and creates a feeling of well being. When HIV damages the gastrointestinal tract it also bombs these serotonin factories. In this way, HIV can be thought of as the Nazis and our intestines represents London as it is being bombed. It is not difficult to understand the connection between HIV and a higher rate of depression, even absent the societal stigma involved.
But, thankfully I have a great HIV doctor and a great psychiatrist, both of which push me to live and thrive. With HIV, taking a pill every day is not enough, at least it isn’t for me. Without the support of my medical team I would be in much worse shape, even if I was faithful in taking my daily pills (which I am, 99% of the time). That is why it is so important to find a doctor with whom you feel comfortable. There is no sense struggling alone when help is out there.
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