One Year Later — 365 Days HIV+
I have thought about writing this for a long time, waiting for the one year date my life changed forever. I usually know what to write, and how to write it, but today, it’s one of the hardest things I’ve tried to write in a year. Today marks one year since my diagnosis as HIV Positive. As shocked as some of you are reading this, believe me, I was more so when one of my doctors called me in to give me the results. I felt so numb, ashamed, dirty, and I didn’t know how to handle it, what to say, what to do, or how to go about anything. I held back tears while I was transferred from one doctor to one that specialized in HIV care. I cried my eyes out when I went to make the appointment, I cried on the way home, I cried all day in my room. I cried at work, when I told my closest friends and coworkers, and tried my best to avoid the topic with my family as long as I could. I needed to get myself together and make sure I could recover the best of my ability before I finally said anything.
But it didn’t happen that way. Eventually I was pressed to tell my parents, my sister, and more distant relatives. It’s been an emotional, mental, and even physical rollercoaster this last year. From being deathly sick in the beginning, to doing all I can to keep my health up, none of it was an easy task when you are trying to answer your own questions and in turn answer others questions. Everything you know about HIV is right, and everything you know is very wrong. While it is not the 80s anymore, people are living longer, medications keep the virus under control, there are still dangers out there living with HIV. The constant thought when one gets a sniffle, a sore throat, or an injury, if one will recover from it, or if it will lead to opportunistic infections, cancers, or other issues that all stem from having HIV. A normal life, well, as normal as one can expect to have, can be had while living with the virus, there are always things that will be different, things one no longer can take for granted.
So today, marking the one year anniversary of my diagnosis, the day I was officially told I am HIV+, I want to tell others who I have kept this a secret from during this last year. I have no idea how some of you will respond, react, or think about me now that I tell you. Maybe some of you will hate me, think less of me, or as many think that it was never a matter of “if” but “when” something like this happens. Another statistic perhaps. Maybe some of you will come to love me more, appreciate my openness and honesty, sharing something personal about my life. Maybe I can help you to understand this more than you thought you knew. I have no idea. But one thing is certain, I am still myself, just something is different inside me. It doesn’t change who I am, yet it completely changed me as a person, an oxymoron so to speak if that’s even the right term to use. While outside I am still the same person you knew before, inside, a battle between my cells, immune system, and DNA are having to fight against a foreign entity that wants nothing more than to destroy everything and turn what it can into a replication machine and combine its own DNA with mine. It’s a hard thing to comprehend when you learn how HIV works, how it sneaks its way into every single cell you have in your body, hides in organs and tissues, and forces its own DNA strands onto your own, deleting parts of who you are, to combine itself into you. Its like a parasite sucking you dry, till there is only itself remaining. Thankfully there are many medications, each reacting to a different part of the HIV viral structure and my own cellular make up that helps prevent this from happening. But at the end of the day, the damage is done, and there is no way as of yet to stop it completely, only slow the reproduction of the virus inside me.
With the medication comes some solace however, it allows my body to reverse some of the damage when I seroconverted. Seroconversion is a painful process, when your body is invaded by a foreign entity, it kicks into overdrive to fight off the infection, unfortunately, the body loses and the virus wins. Medication such as the ones I am on, purposely introduce flaws into the HIV DNA that prevents it from fully integrating with my own DNA in my cells, it helps my cells also prevent the virus from exiting my cells which slows replication of the virus which in turn helps drop the amount of virus in my blood, allowing my immune system to rebuild, to fight back, and to prevent me from spreading the virus to others by limiting the amount of the mature virus in my blood. This means I am undetectable, by standard tests, HIV can’t be found in my blood because the medications I take are working and doing exactly what they should do. However, I am not cured, all it means is that non-standard tests can still see the antibodies of the virus, showing I have been exposed. Because HIV is not curable, and it is scientifically proven without medications the virus can mutate and rebound, eventually in time, without medications it will show up again and be detected in my blood. Though, as long as I remain on medications, mutations are limited, viral increases mitigated, and I can live a long healthy life (as healthy as possible I should say).
So why do I tell all of you this? Because one year ago, everything I thought I knew about HIV was thrown out the window. When I was diagnosed, I was scared, and everything I knew to be proven I forgot in a second, I thought I could spread this through my sweat, my tears, even just touching things I felt I could spread it. I was very sick at the time, with an immune system that was just days away from complete collapse and near hospitalization. I felt the end was near, I wasn’t thinking clearly, and I was scared for myself, and for others. I felt dirty, like I somehow deserved what happened, yet I felt, and still feel self-pity. As if I knew better, but didn’t care. Fact of the matter is, I knew better, and I did care. This was not something I asked for, and without going into details (you can read more about it in previous blog entries), I somehow had this pit of dispair I couldn’t climb out of. I was just another statistic, living up to what people believed about gay men, that we all are promiscuous, all have HIV and all getting what we deserve by contracting this disease. And while there is evidence in that corresponds with this, specifically in industrialized nations, it simply is not true on a world standard. But I am not here to debate whether being gay means being HIV+ or not. Fact is, it doesn’t.
I am here to tell my family, those who have stuck by me though everything else a person goes through, this one big issue in life that can tear people into two. I’m not sure if I should ask for validation, forgiveness, understanding, support and love, or if I am just saying it all just so I make myself feel better telling you all that I am HIV+ and have been for the last year… I just know that it’s something that needs to be said. I hope that everyone can ask respectful questions if they have them, express their concerns when they need to, and allow me to answer them, educate them, and grow with them in a better, honest, open light. This is not easy to say of course, or rather in this case to write out, but it’s something I had to do.
An HIV+ friend once told me that I would either tell everyone I knew, or tell no one and live a secret life. That friend only told her closest handful of friends, never her family, and she felt it was detrimental to her wellbeing, she could not get the love and support she needed at that time. She went through it alone and it ate her up inside. She may live a full life now, helping others who are HIV+ and at risk, but there is still a part of her that yearns to change her decisions to keep quiet. She urged me not to follow in those footsteps, and while everyone I come in contact with in life doesnt have to know, its important my friends, family, and romantic partners know.
So, to my family, in no particular order, Lisa, Frank, Joey, Daniel, Bridget, Terry, Trevor, Travis, Jessica, Rachel, Jesse, Daniel, Nicky, Albert, Tina, Patty, Trisha, Carol, Darren, Desire, Elizabeth and everyone else I missed because my mind is running a mile a minute — I hope this doesn’t change anything between us. I hope this is a learning and building experience, something that brings our family closer though honesty and compassion. I’m not asking for sympathy, just understanding, not treated differently, but the same as before, but knowing that at times, I will be at my worst, others at my best, it’s just how this virus works. And to be clear, you can’t contract it from me through hugs, through silverwear, clothing, using the same bathrooms, touch, kisses, or anything like that. I am undetectable, and will remain that way as long as the medications I take daily keep the virus under control. Even if I bleed, the chances of contracting it are extremely rare in this case. There should be no need to fear me, I’m still me.
And since you are reading this far, a few things I ask upfront…
Do not ask me how this happened or who was involved. It’s a sore topic still a year later. If you want to know more, read my previous blog entries. I am happy to discuss some aspects in private, but I decline and shy away from in depth conversations on how it happened because I still do not have full closure regarding it.
Don’t be insensitive — telling me things that are not true about HIV only will make you look silly, but instead and rather allow me to set the record straight by asking questions if things are true or not. If there is one thing I’ve managed to do this last year, it was to educate myself as much as possible about HIV. Bringing me to my next….
Know that I am fully aware and very much knowledgable and in tune with my health. I see a doctor every 6 weeks, I am tested for viral load (detectability) and CD4 (immune cells) in that time, as well as liver and kidney functions and other medical issues that come with being HIV+. This includes STD testing regularly even if I have not had any sexual contact of any sort with anyone since I contracted the virus. I let any and all potential partners of interest know about my status up front and urge them to get tested regularly, just in case anything does become from these interests, all parties are informed.
Know that there will be good days when I look and feel normal, and I can do everything I could do before…but understand there are bad days that come with every good. Days where I feel sick, my stomach and joints and head will pound, side effects that linger due to the meds, and even just general malaise and lethargic fatigue often mean I am out for the count much faster than I was prior to contacting the virus. It happens, but doesn’t mean Im dying.
Don’t ask me how much time I have to live. The real answer is “I dont know”, and a more blunt answer is “I’m still alive” and that’s all that matters. My immune system has rebounded, and Im no longer at risk of hospitalization. I can live a full life, or one day my body could just have enough and call it a day. All that matters is I am still alive and each day is precious, even if I am recovering from a small sickness and in bed for 2 days, Im still alive and appreciate the time I have.
HIV and AIDS are and are not the same thing. HIV can lead to AIDS. HIV is a virus, it destroys the immune system and is a catalyst for other health issues that I can explain more about in person. AIDS is a condition when HIV has destroyed the immune system to the point it cant recover or fight off infections that we normally take for granted, though in fair honesty here I was just days away from being diagnosed as HIV+ with AIDS due to my badly damaged immune system and secondary infections that are commonly known as precursers to AIDS diagnosis. Being HIV+ doesn’t mean you have AIDS, nor does it mean you will eventually, it’s all subjective and relative to how far the virus progressed. You can reverse AIDS conditions with proper prompt medical treatment, you can’t reverse HIV. Do not think I have AIDS. Medical research is getting closer and closer every day to providing new meds that are less harsh, more effective at fighting HIV, as well as medications at risk people can take to prevent contracting the virus (don’t ask me why I was not on these before), and a lot of trials being done regarding vaccinations to prevent HIV, as well as major work done on finding functional cures where medication may only need to be taken once a month or less. I am hopeful for these advancements and believe a functional cure, or at least medication that makes HIV replication less deadly and more like a common cold virus is possible and will happen in our lifetime. It just hasn’t happened yet, but from the studies Ive read about, what my doctor and I believe, its close while still 20 years away it is soon to happen.
Love me just the same — Nothing else has changed, my personality is still there, my mind is intact, I still look the same for the most part, maybe a few pounds lighter, a little more worn out, but all in all I’m still the same person, I still have feelings, I still love each of you and I can still be hurt by harsh words…
With that said, I will end this blog post… I can answer questions you have in time, please be patient, it takes a lot to write all this, and even more to prepare myself for the responses I may get from it.
Much love..
