Best-Of Advice

On being present in your terror

I’m 28. I tested positive for HIV today. I have all the education to know precisely how grave this is (and is not) as well as a network of friends and family that are stunning me with their fortitude right now.

But Coke, I am so lost. I imagined this moment a hundred times, but I have no idea what to actually do now that it’s happened. How do I move forward from here and allow this experience and permanent life change to enrich my experience? I am filled with terror right now, but the deepest one is that my life will just continue status quo, only with an added layer of crippling regret and internal stigma that will diminish me. How do I handle this?


Many years ago, I had a day like you’re having today. I didn’t test positive for HIV, but you’ll have to trust me when I tell you that the news I got was equally life-changing and equally devastating.

I know exactly what you mean about the existential terror of the status quo — that dreadful feeling of sameness that comes from the world not even noticing how suddenly awake you are. You’ll walk around like that for days, maybe weeks, a completely different shade from everyone else. Some days brighter. Some days dimmer, but never quite matching the intensity of your surroundings.

I also get that you’re lost, but I can’t tell you where to go from here. Nobody can. You have to figure that out for yourself. Don’t worry. You will. Unfortunately, you can’t skip ahead to the part where your life is enriched from the experience. You gotta go through some shit first, and it’s gonna be fucked up for a while.

In the meantime, the best advice I can give you in this moment is to go out tonight and have a really good meal. Go to your favorite restaurant. Order your favorite dish.

I know that seems trite, but it’s not meant to be. I’m quite serious. When I was having a day like you’re having today, that was the single best piece of advice that anyone gave me — go treat yourself to a special meal. Take advantage of how awake you are.

Have an extravagant dinner and notice everything about it. Get dessert. Indulge. Use all your senses and be present in your terror and let your perspective shift just a little bit — that’s all, just the tiniest little shift — and let that be the place where you start, and then just go from there.


32 thoughts on “On being present in your terror

  1. Sorta says:

    In some ways, life will go on much the way it did before, but that doesn’t mean that the regret is going to ossify over your being until there’s no you left. Based on those two short paragraphs, it seems pretty plain that you’re adept at expressing yourself. Lend that to your enrichment. I too have had my life take a pretty sharp left on me, so I’m not just pulling this out of my ass. You’ll find your way. Take care of yourself while you do.

  2. VeryOff says:

    we are always alone in our pain, but together in comfort

    thank you for sharing so we could feel something more

    • JC says:

      Thanks for finding this! I remember it well, except that I’d forgotten she told us she grew up in the south (but yet I always guessed this.)

      Here’s being thankful for chemo, or the world would be less one beautiful old soul.

  3. Anna says:

    I had a dream once where I tested HIV positive (and HCV I think). I vividly remember the horror, grief and shock (and a bit of self-disgust), and feeling like my whole future was crashing down on me. I woke up in a panic, crying, till reality and contextual memory seeped back into my brain.
    That was a bloody dream. I really hope you’re doing alright OP.

    When you get a chronic affectation, it feels like everything is being torn apart, but you should know there will be a new normal one day. And I’m not trying to be insensitive, but the are very good chances that will be a rather boring, decent normal. You might well remain undetectable and asymptomatic for years if not for life.
    And fuck the stigma and regret. I know where it comes from, but HIV is an inanimate strand of RNA in an inanimate protein shell, the infection has nothing to do with who you are, it doesn’t care. You just fell on the wrong side of probability!

  4. Brynn says:

    I’m sure you’re already quite aware of anecdotes and statistics, but I have multiple HIV+ friends in happy, healthy relationships with HIV- people. I’m not trying to silver-linings this shit for you, but the intimacy and trust that grows within HIV+/- relationships is truly unique.

  5. Angie says:

    To the OP-

    My best friend and former roommate recently got her PhD specializing in HIV immunology. So… I am not claiming any expertise, but she and I have had many conversations about this disease and I’ve attended some talks with her.

    From what she said, HIV is a very livable disease. It’s not a death sentence. It’s not even an “avoid sexual activity” sentence (though don’t jump the gun on that). If you stay up to date on medications, it should be possible to bring your viral count to undetectable (I think that’s the lingo).

    Talk to doctors. If you’re in Los Angeles, check out APLA or find something comparable in your own city.

    Get educated, medicated and then you will be able to garner control of your health, future relationships, etc.

  6. Betsy says:

    What I love about Coquette’s advice is that she’s great at acknowledging how much of life is intuitive and impossible to put in words. Nobody can really give you a roadmap for everything.

  7. C. says:

    Coke, I wish you would write more about this.

    I wish my early traumas with death and “bad” health in others hadn’t made me so anxious about my own mortality. Sometimes I think I’m a bad ass because I’ve accepted some of it, other times I feel very weak.

  8. BP says:

    I just got an advanced stage cancer diagnosis at age 31, so I’m feeling similar terror. It comes in waves but I feel it will always be with me now.

  9. Courtney says:

    “that dreadful feeling of sameness that comes from the world not even noticing how suddenly awake you are”

    Just fucking brilliant. Perfect use of language to describe an otherwise indescribable feeling. And only those who have experienced it will understand and appreciate how on point this combination of letters truly is.

  10. Maya says:

    To the OP. I’ve been an HIV Test Counselor. The biggest suggestion I have for you is, find a counselor who has experience in HIV. You don’t need to be alone in this. Regardless of your sexual orientation, a queer community center would be a good place to start in terms of finding help. A skilled counselor will help you process the terror, regret, and stigma.

    You say you don’t know how to move forward right now as if it’s a bad thing, but that’s so normal. You JUST got your diagnosis. Sit with the terror a bit – trust yourself that you’ll move forward when you’re ready.

Leave a Reply

Your email address will not be published. Required fields are marked *