HIV & Depression

 How Long-Term HIV Survival and Depressive Episodes Go Hand-In-Hand

Living with HIV for decades turns time into something strange. The urgency of the early years eventually fades, but the virus doesn’t. It just settles in, like a roommate you never invited and can’t evict. The crisis slowly becomes routine, and routine becomes its own kind of prison. That little pill that keeps me alive is both my miracle and my mirror—every morning it reflects back the part of me I’d most like to erase. I swallow it with water and a wince, a daily ritual of gratitude and resentment in the same breath.

What people don’t always see is that long-term survival comes with a quiet, grinding grief. I outlived the panic-era headlines, the funerals, the whispered “Did you hear…?” phone calls—but survival has a body count, and sometimes I feel like I’m standing on top of it. Survivor’s guilt isn’t just a dramatic phrase; it’s the heaviness you feel when you realize you’re still here while faces you loved live only in old photos and half-faded memories. You start to wonder why you were spared—what cosmic math decided you get to grow older with this virus while others never had the chance. The world moved on to new scandals and new crises, but my body never got to move on from this one.

Then there’s the stigma that doesn’t die, it just evolves. It lives in the awkward pause when I disclose my status. In the way some people say “Oh… thank you for telling me,” like I just handed them a ticking bomb instead of a piece of my truth. It’s in the dating apps where you either brand yourself with three letters—HIV—or play this exhausting game of timing and disclosure and risk. Even in 2025, with PrEP and U=U and all the science in the world, there are still looks, still questions, still people who treat you as a walking warning label instead of a whole person.

Sex, for me, isn’t a minefield of disclosure anymore; I took that part out of the equation a long time ago. My status is right there on every profile, in plain sight, so anyone who can’t handle it can quietly move along before we ever exchange a word. It’s a kind of harm reduction for the heart: I don’t have to brace for the awkward pause, the panicked unmatch, the “sorry, I didn’t realize…” message. But there’s a quieter cost to that system too. I never see the rejections—I just feel the absence. Fewer messages, fewer replies, conversations that die on the vine. You can’t prove it’s because of those three letters, but you feel it anyway. It becomes easy to see yourself less as a person who happens to have HIV and more as a filter people are silently passing or failing before they ever bother to meet you.

Over time, that kind of invisible sorting seeps into the bedroom, even when I’m with someone who does show up, who does understand U=U, who doesn’t flinch at my status. My body still remembers years of being treated like a risk instead of a partner. Desire gets tangled up with self-consciousness, with side effects, with the sense that I’m a “safer choice” only because I’ve turned my sex life into a disclaimer-first operation. It’s not that I’m afraid to be honest; it’s that honesty has taught me exactly how conditional other people’s desire can be — and some days my libido responds by just shutting the whole system down.

Depression doesn’t just drain my mood; it interferes with the one thing that’s literally keeping me alive. When I fall deep into an episode, basic tasks turn into impossible mountains. Getting out of bed feels like a negotiation. Feeding myself, brushing my teeth, taking a shower—those start to feel optional. The pill bottle on the nightstand stops looking like hope and starts looking like a judgmental little witness. On the worst days, I just roll over and let the hours pass, doses slipping by untouched. It’s not always a dramatic “I want to die.” Sometimes it’s just a quiet “I don’t care what happens to me right now,” and that indifference is its own kind of danger.

That’s what scares me when I finally surface: how easily survival can start to unravel in those stretches. If I miss meds for long enough, HIV stops behaving like a managed chronic condition and starts becoming a real threat again. The virus I work so hard to keep caged gets a chance to wake back up. Then the shame hits: You know better. How could you let this slide? That shame folds right back into the depression, which makes it even harder to pick the pill up the next day. It becomes a loop—virus, pill, depression, avoidance, more risk—and it’s terrifying to realize how quickly that loop could become deadly if it goes unchecked.

From the outside, it just looks like I’m “having a rough week” or “in a funk.” Nobody sees the small, lethal math happening in my bedroom: missed pills, skipped meals, a body quietly absorbing every choice I’m too numb to make. Long-term survival is sold as lab numbers and adherence charts, but for me it’s also this constant fight not to let the darkness talk me out of basic self-care. The same daily pill that gave me a future back can become the first thing I stop reaching for when the future feels too heavy to hold.

And yet, here I am. Still taking the pill. Still doing the laundry. Still paying bills, going to work, flirting on good days, hiding on the bad ones. That’s the darker side of survival no one prepared me for: not the drama of dying, but the discipline of living. Waking up again and again to the same virus, the same bottle, the same history, and choosing—sometimes reluctantly, sometimes angrily—to keep going. It isn’t inspirational. It isn’t neat. It’s just real.

At The Precipice Once More

 LOOK OUT FOR THAT FIRST STEP. IT'S A LULU!

I'm really trying hard to have a more positive outlook. Truly! But I can't seem to stop tripping over huge reminders that taking two steps forward will ultimately land you three steps back. It's like just when one awful thing resolves itself, there's no time to even celebrate that small win before its mutant cousin pops up with a chip on its shoulder looking to double the awful you just finished tidying up. 

A major development in my ongoing saga of the mysterious "investigation" that has haunted me for the last two-and-a-half years finally came to fruition this past
weekend, and there are two ways of looking at it. Either these nosey nellies calling themselves "investigators" finally did some elementary investigating and uncovered the truth, which, surprisingly, they shared with a certain former friend whose raison d'etre for the last couple years has been to shout "Shannon's a murderer!" from the mountain tops. The alternative view, and the one I'm actually inclined to believe, is that he and his gal pals got creative and put on one of their now famous scripted performances wherein the former friend gives a stellar performance as a decent human being just long enough for me to swallow the act and buy into the ruse. 

Not this time! Fool me thrice, and . . . well, shove it where the sun don't shine, I guess. Trust is a resource I now guard more tightly than China on rare earths. He killed off my former default setting, which was to trust people completely until they give you a reason not to. Ah, but it's for the best really. There are just way too many people around who look for simps like that and suck 'em dry before they use up that free trust and then bounce. I'm done with those guys. 

Either way, it represents a milestone for me, and it felt like a huge weight was about to be lifted. I could actually feel myself ready to rise, to lift off and glide toward a better future. Nah-ah! No, sir. Get your fat ass back down here in the dirt! Pigs don't fly, big boy! 

Because this troupe of assholes, er. um, actors playing at investigating are incapable of talking to one another at a volume lower than 120 decibels, especially when the whole gang is on speaker phone or Zoom, I got to hear the universe winding up for the next kick to my nuts. I might have been cleared by these jokers of having ever been a murderer or a terrorist, but because they have been invading my privacy for going on three years now, they've managed to make a list of lesser gripes that the Head Cunt in Charge seems intent on pinning on me with a warrant, even though this bitch and her chums are personally responsible for irreparable damage to my life and for the loss of what was a very important relationship for me. 

Bitch has zero empathy and no sense of shame at all. A decent person, upon learning they were completely wrong about something so terrible would reflect on their actions and the impact they had on their target during the course of their mishandled blunder of an investigation and think, "Hmm. I fucked up, and this guy was really hurt in the process. That's on me, and I'm gonna leave this dude the fuck alone. He's earned a break, surviving me and my around-the-clock surveillance as well as he did." And then they would tuck their tail between their legs and shuffle off quietly into the sunset. 

Not HCiC. She see's her errors as inconsequential and focuses on saving face instead of giving grace. Her priority is to find something, anything that will justify the HUGE expense she's racked up with her fruitless and baseless three-year crusade to catch a killer that never existed. What a fucking bitch. 

Even her fellow investigators were taken aback by her gall. One dude, who I actually think is pretty cool, stood up to the twat for a good many hours yesterday, arguing from a place of accountability and sympathy that there was no way in hell there should even be a discussion about sending me to jail after what they did to my life. He's right! 

I just started my work study job last week, and the drama going on all around me is putting me in very real danger of losing my financial aid. I'm taking three classes this quarter, and I'm on a collision course with utter failure in at least two of them, because I've been so consumed trying to figure out if and when these assholes are going to come for me. If I fail even one, my financial aid gets pulled for next quarter, which means I can't attend school or work study. If I don't attend school, I have to start repaying student loans, without which I can't pay rent. Without school, I no longer qualify for SNAP food benefits. Without those, I don't eat. It's like I said, two steps forward. . .here they come.

But, nah. Fuck them. I gave my friend all my support, my love, my loyalty, and in return I earned his betrayal, his lies, and his crusade to punish me for embarrassing him. I did everything I could to protect him, and he wants me in jail for failing to do that. It's so fucked up! He wants an apology I have not been given an opportunity to give him, and because it's so late coming his way, he's beyond angry. He's nuclear. He's lost all reason. There is no getting through his wall of hatred to his gooey Tootsie-roll center. He's lost to me, and in becoming so lost, has become a danger to me. 

His Growth, Their Gain, My Loss

On the subject of HIV stigma and the impact it has on those it touches, I am not naïve. It's safe to say I've encountered it firsthand a time or two. And I've had 26 years during which to observe how many different ways HIV stigma feeds into other facets of my life. I've seen how stigma based on ignorance feeds fear and results in rejection, discrimination, and even violence. The moving parts of that basic machine may vary from facet to facet, but the function they carry out when in motion is the same. Ignorance is the root of the problem, and one that, much like the retrovirus in question, wreaks havoc on those things that might otherwise be its undoing.

Ignorance can inflate the fears of a person or group of people beyond what most would consider rational limits. It supercharges a person's fear by highlighting all the unknowns and filling them up with terrible possibilities.

I'll give you an example.  A person is never taught by a trusted, credible source like the CDC, that people living with HIV who maintain an undetectable viral load are essentially unable to transmit the virus to a partner. As far as this person understands, based upon whatever sources of information he's had up until now, an HIV-positive person is leaking virus all over the place if they bleed or ejaculate on or inside an uninfected partner, thereby transmitting the virus to any person they share a needle with, have unprotected sex with, or give birth to. In this world he inhabits, people living with HIV are forever one mistake away from infecting those HIV-negative people with whom they interact.

That's a frightening prospect! It discounts the fact that adherence to a regimen of antiretroviral medication therapies can lower the virus' presence in one's body to such a level as to be undetectable by the tests designed to detect it. It ignores evidence that PrEP and TasP have been proven to be 99% effective at preventing new HIV infections between  serodiscordant partners who adhere to their daily medication routines.

These missing facts remove an aspect of comfort and reassurance from the overall picture of HIV in his view of it, and it leaves gaps in his understanding of HIV that are then easily filled with musings, ponderings, misinformation, and the unknown, each of which can ignite fear.

My very close friend, who you might guess from the fact that my entire blog has been dedicated to him, now comes into this story. Since we first me, he has shown that there some gaps in his understanding of HIV and about the risk involved in various sex acts with an HIV+ partner. There would be a statement here about how the virus did this when the body did that and then something else arrives and does this other wrong thing, and he knows, because it came from someone's story retold about their uncle's former lover's old maid, or some such convoluted string of citations and sources.

It was clear that he experienced a certain amount of nervousness or anxiety during sex with me, but I didn't have the heart to ask him about it, thinking he was already trying so hard to hide it so that I wouldn't feel judged or feared, even if somewhere deep down inside he was judging or fearing being with me just a bit.

He was very polite and always respectful whenever we discussed my HIV. He was curious to hear firsthand details about how the virus operates, how it can and cannot actually be passed between partners, and about how effective PrEP and TasP are at preventing HIV from infecting him. I shared my experience and knowledge, addressed some of the ways that stigma had negatively impacted me, and corrected those parts of his knowledge that were ill informed and misleading. He accepted those facts and experiences into his world view and has begun to build a new understanding for himself that now has less room in it for ignorance to breed and nurture fear.

My good friend is now taking Truvada as PrEP, and he now has less anxiety about having sex with men who have HIV if he feels he can trust their claims of being undetectable. I am proud to have been a part of his new expanded view of the facts surrounding HIV, and I am happy that he now carries less anxiety about having sex without using condoms. I want him to feel safe when he is safe and to enjoy the experience without being concerned about becoming infected. 

That being said, I would be lying if I said I wasn't also grievously hurt by his lessened worry and concern. Given the state of our relationship, following what was a transformative and  devastating weekend, it is quite clear that sex between us is no longer a good idea for either of us. It hasn't been completely ruled out as a future possibility, but even then there are likely to be complications for both of us if we continue having 1-on-1, intimate, meaningful sex with one another.

He would be pushed closer and closer toward feelings of romantic love and obligation toward me, which he steadfastly declares he does not want for himself at this point in time. Having spent the last two decades in one relationship or another, he wants to give himself the space to feel what being beholden to no one but himself is like. He says that he doesn't want any relationship with any person right now that is close enough for them to be hurt by his actions, deeds, or words. He wants to have only those friendships that he knows can be maintained with minimal effort and could be ended without hurt feelings or dramatic separation. 

For me, having sex with him would weaken my resolve to turn off the feelings that were causing me so much pain and him so much anxiety. It would be too easy for me to regard it as love making, which would make me susceptible to a resurgence in romantic feelings and a desire to win his love and commitment. Those things are simply not available to me at the moment whether I like it or not. So I can't let myself consider them as factors in the relationship I manage to salvage between us. I have to lock those away in order to move forward without constant pain and emotional trauma.

Dealing with all of that is already pretty complicated. Now consider this:

The man with whom I was falling in love, who harbored a number of fears and reservations about how to have sex with me when we were still having sex, is now more comfortable having sex without condoms with HIV positive people -  except for me. It seems that my being such a temptation for him to begin to view me as his boyfriend has won me the great honor of NEVER getting to be his boyfriend, and the added bonus gift of getting a front row seat to watch him evolve beyond the fears that plagued him during sex with me into being able and indeed a bit more than willing to engage in more and more bareback sex with a now widening range of possible partners free of such fears or concerns.

What a fucking fucked up mind-fuck I have created here. Fuck my life. Fuck all of these fears. Fuck his worries and fuck my broken heart and fuck all the fucking suspicions and jealousies and betrayals and fights and separations. And fuck me for fucking myself thusly. FUCK. How am I going to pull this off?

Surely, one day in the not-too-distant future, I will be able to look back on this absurd collection of painful experiences and laugh. I will have figured out how to move forward and I'll be less impacted by the memories I'll then have of the time I am chronicling right here, right now, and the comedic element inherent in these ever increasing misadventures in adult friendship will be made delightfully apparent and nostalgic in my melancholic recollection of it. 

These things have to be true if for no other reason than that I am paying so richly for some kind of relief with a currency made of tears and anguish and emotional earthquakes that keep shaking the foundation upon which my sanity rests. The hurt I am depositing into eternity's' First National Bank of Karma is surely going to secure for me that small future luxury or else it has all just been a waste of time and a regrettably unnecessary injury upon my future happiness.