Ten Lessons I’ve Learned During my First Year Living with HIV
Last year, on December 21st, my doctor called me at work to inform me that I had tested positive for HIV. And just like that, my entire reality changed.
Physically, it was a quick and pretty straight forward journey: I saw my doctor on the 23rd, had additional blood tests on the 24th, started taking antiviral medications on the 25th (Merry Christmas!), received final confirmatory test results on January 5th, and by February 12th I had an undetectable viral load— which I have had ever since, due to daily adherence of my medication. But this is not about my physical journey. There is plenty written out there about the physical aspects and medical developments of HIV, which I encourage you to read if you are reading this, but I found reading and listening to others’ personal stories to be especially helpful for my emotional healing in the weeks and months following my diagnosis. Every individual’s circumstances are different, as is their personal reaction to learning their positive status, and in writing this, I don’t claim to represent anything other than my own story of personal acceptance. In sharing the lessons I’ve learned throughout this first year of being positive, I hope to accomplish two things.
First, I would love to be able to help someone who may just be learning of their own, or a loved one’s, positive status. When I found out, I didn’t have any close friends that I knew who were positive. But one acquaintance, a now close friend of mine, had come out a few months previously on Facebook, and so I reached out to him to see if he’d be willing to grab a coffee. He listened and then shared his story. Throughout this year I have gone back to that first chat many times and have taken comfort in the fact that many of the emotions I was feeling, thoughts I was thinking, or experiences I was having were shared experiences with this man.
Secondly, I hope to continue opening up the dialogue. While we’ve come such a long way in the past 35 years in the fight against HIV, there is still much work to be done, not the least of which is to educate and continue to fight stigma. So, without further ado, here are ten of the lessons I’ve learned during my first year living with HIV.
1. The meds really are amazing
Okay, so I lied. I’ll make one statement about the medical developments.
I had known the meds had come a long way, but damn. My doctor, who is also an HIV specialist, put me on this brand new HIV med, Genvoya, a single tablet derivative of a previous drug called Stribild but with fewer potential kidney and bone density side effects. Genvoya had been on the market for one month at the time of my diagnosis. It was so new, in fact, that my doctor had to give me a handwritten prescription because it wasn’t even in their system. I felt very on trend with my medication!
I take the pill once a day in the morning, and as opposed to older meds, this one also had very limited noticeable side effects, mainly some minor digestive issues which wore off within the first month. Also, as I mentioned above, I had become undetectable within just over a month of being on medication, thus reducing the harm the virus can do to my system and making the likelihood of my passing the virus on to anyone else nearly negligible. Because of great healthcare and a Gilead sponsored co-pay program (the same that helps covers the cost of Truvada, the medication currently used for PrEP), I pay $0 for a medication that would otherwise cost $3,000/month. I learned of my diagnosis very soon after seroconversion, which was only possible because I had myself tested regularly. And since my doctor started me immediately on my medication, he pointed out that I should live an absolutely full, long and healthy life. In fact, there is a good chance I may never see any actual physical effects from this virus.
2. You can’t rush your healing
Any one of my friends will tell you I love to schedule. Five-year plans are as natural to me as breathing. So, of course, when I found out I was positive, I immediately made a plan of how I was going to deal with it. It was the following:
January — Allow self to be sad. Digest everything. Sort out emotions. Drink lots.
February — Pick up the pieces. Move forward. Start yoga. No drinking.
March — Back to normal.
Well, in a surprise to no one, it turns out that’s not how it works. In a moment of frustration one week in March, I went to an evening yoga class (thanks, February!). I had been down that entire week and couldn’t pinpoint the exact reason why. Everything had been progressing so nicely, so why was I feeling anxious and upset? As the class ended, we laid down for Shavasana and the instructor played a song I had never heard, “You Can’t Rush Your Healing” by the artist Trevor Hall. In it he sings:
Well everybody’s got that chapter
Of dark and darker days
Saturn seems to be returning
And his essence can’t be tamed
Some may like to fight it
Try to plan a secret attack
But the more you push it
The more it’s pushing you back
You can’t rush your healing
Darkness has its teachings
Love is never leaving
You can’t rush your healing
Well shit. If that wasn’t a sign, I’m not sure what is.
I began to realize I had to throw my bulletproof “plans” out the window and just allow this year (or two…or three) take me where it may. Now don’t think for a moment I haven’t continued to try and plan every minute of my healing process, because I definitely have. But in the back of my mind, I have also been more accepting of the inevitable bumps along the way.
3. You can’t rush your healing, but you also can’t rush your pain
When something like this happens, you cannot predict how you will react. When I found out, I immediately felt numb, my ears rang, and stomach dropped. But, I didn’t cry. That same night, as I told the man I was dating, he asked, “So how are you doing?” and my response was, “I honestly don’t know.”
A week or two passed, and as shitty as they were, I never cried. Not once. I suddenly became worried. “My God, am I really that fucked up??” I like to think that part of this response was due to the fact that I was educated about the virus beforehand and knew it wasn’t a death sentence or even something that would limit me going forward. But I’ve since realized I just needed my own time to process.
A day after I received my confirmation test and two weeks after that initial call from my doctor, I fell into a funk. One of my friends happened to be in SF for a last minute business trip and reached out to me. She had no idea what I was going through but asked if I wanted to grab dinner. And so, over pizza and wine, I came out to her. Two moments from that dinner will forever be cemented in my mind. First, her response was one of the best I’ve received. She asked, “So, what does that mean today, in 2016.” Perfection. And second, when I told her that I was concerned that I hadn’t cried, she shared with me that she herself had recently gone through a moment of personal crisis and it wasn’t until three months later that she broke down and cried in the shower one morning out of nowhere.
Sure as hell, ten days later, on a beautiful Sunday in the city I was watching a movie when, out of nowhere, I began feeling anxious. I decided to utilize that energy and headed to the gym. On the elliptical, I started to listen to one song on repeat, “Bird Set Free” by Sia. The anxiety refused to flee and so I pushed forward, faster and harder until I was out of breath, sweat running down my face, with the words “Yes, there’s a scream inside that we all try to hide, We hold on so tight, but I don’t wanna die, no I don’t wanna die, I don’t wanna die” ringing in my head.
As I walked home, rain began to fall, and I felt it coming. I got home, closed my door, and collapsed on my apartment floor and began crying. Finally. There was so much held back in those tears and so much that had needed to be released. It sucked, but at the same time, felt so damn good. And speaking of crying…
4. Find the thing that lets loose the floodgates
Another friend of mine, who has survived more than I can even begin to imagine, gave me an additional piece of advice in learning how to cope with this new found reality. He advised me that I should find the thing that brings me to tears on demand, because there will be times in the months ahead that I will need that release yet again.
Well it turns out it wasn’t Sia, thank God, because Lord knows I love that woman, and I would hate to never be able to listen to her again in fear of a complete meltdown. (Side note, in another “thank you Universe” moment this year, Sia posted this article back in June while I was considering whether or not to come out.)
No, my go-to became documentaries about the HIV crisis. Yep, that would probably do it. “How to Survive a Plague” and “We Were Here” provided the release I needed when emotions were building up. The movies not only helped in that aspect, but they also reminded me of the debt I owe to the lost generation, those who are not alive today to benefit from the medical advances that have been made. Those who suffered the worst of the stigma, to the point that they were not even able to die with dignity. These movies remind me that I must do whatever I can to fight this virus and the stigma that often comes with it, including, in my own small way, coming out today.
5. Come out, come out, wherever you are!
Earlier this week, I told my friend that I was planning on coming out today. He sent me this Harvey Milk quote in response:
“Every gay person must come out. As difficult as it is, you must tell your immediate family. You must tell your relatives. You must tell your friends if indeed they are your friends. You must tell the people you work with. You must tell the people in the stores you shop in. Once they realize that we are indeed their children, that we are indeed everywhere, every myth, every lie, every innuendo will be destroyed once and all. And once you do, you will feel so much better.”
While Harvey was talking about coming out as gay, I’ve found the same holds true for being positive. As with being gay, I do not let being positive rule my identity, but I certainly cannot deny that it is now part of who I am. And with that identity comes certain obstacles and responsibilities. Harvey was right in that with each person I’ve come out to, I have felt better. I have been fortunate in that my coming out has been received with love and support and I fully acknowledge that not everyone is as lucky as I am in that regard. I truly believe that each person should only come out when they feel ready to do so. As with the healing and the pain, one should not rush this. You will know when it is the right time.
Additionally, disclosure is yours to own. You can disclose as much or as little, to as many or as few as you so choose. For me, coming out has never been an option. I knew I was going to do it the week I found out. But there is one piece of my story that I have chosen to keep to myself and that is in regards to how I contracted the virus. My reasoning is simple; there is no value in sharing this information. It will not change one thing. Instead of obsessing over the past, I choose to focus on improving my future. That is my choice and I am thankful to have family and friends that have respected my decision.
6. Create a diverse support system
As I have already alluded to, I have one of the best support systems anyone could ask for. It is because of this support system that I have been able to emerge from this year more resilient than ever. If you are going through a similar crisis, whether it be HIV or some other struggle, may I suggest surrounding yourself with some of the following:
The Honest One: This is the person who, while being supportive, also calls you out on your bullshit, like hypothetically “creating a schedule to get through the pain”. They will not be afraid to tell you what you may not want to hear.
The Specialist: This is the person who is always up to date with the most recent research and knows all the ins and outs about the virus. They might just send you an animated, educational PowerPoint about HIV. #themoreyouknow <insert rainbow>
The One who Knows How to Make You Smile: This is the friend who would do anything in the world to bring you to your previous happy state. For instance, they might surprise you with front row/center tickets to your favorite artist so that you may find true, unadulterated happiness, even if just for a moment, once again.
The One Who Can Relate: This is the person who has gone through crisis and/or trauma. They will understand what you are going through. They are the ones you can call or see when you just need to vent and say FUCK.
The Childhood Friend: This is the person who knows how difficult it will be for you to come out to your family. They will support you and hold you up during your most vulnerable moments.
The Blood Family Member: This is the family member who gets you. You. As you are. With no need to justify or explain yourself. They are the true meaning of family.
The One Who Is Angry on your Behalf: This is the person who, after coming out, responds that they are angry and pissed, even as you are trying to be okay with your new reality. They are important because the truth is, part of you will be angry, and that is okay.
The Wild Card: Finally, this is the person you did not see coming. They fill a role you had no idea would need filling. They pop up unexpectedly at the exact perfect time. They are irreplaceable in your journey and yet they have no idea how big of an impact they have made in your life. Let them know.
7. Create a support system, but also spend some time by yourself
Just as much as each of those above individuals helped me get through the year, they would never be able to do everything. One week after I had received my news, I got drunk on margaritas. Remember, this was my “be sad/drink lots phase”. And so, in my slightly inebriated state, I came to the obvious conclusion that I should book a trip to Tanzania and climb Mt. Kilimanjaro. Just a simple climb to 19,341 feet to clear my head.
Fast forward nine months, and I am standing (barely) at the summit. But the summit was not the important part of that trip. In my boozy state, I knew that I was going to need some time to myself in the year to come. I am the type of person who likes to stay busy, a quality my mother has noted in me ever since I was a child. For that reason, I am thankful it has been a hectic year, but on the other hand, up until the trip, I hadn’t really confronted my struggle head on for any extended period of time. Well it turns out, booking a trip halfway around the globe to climb a mountain and go on remote safari without wifi or cell service, by myself, for three weeks, affords one plenty of opportunity to do some self-reflecting. On this trip, I was finally able to find some peace.
Of course, I returned to the U.S. needing to clean up debris from the shit storm that was the rest of my life, but this trip filled me with a sense of calm and happiness that I had not felt since before that fateful call from my doctor.
8. We are all human
Just as this has been a new experience for me and I have made some missteps along the way, it has been a new experience for those that surround me. I made the mistake at times this year in expecting perfection from my family and friends. I’m not sure why I thought everyone was going to react by saying the exact right thing at the exact right time. In reality, my diagnosis was just as much an uncharted territory for them as it was for me.
In coming out this year I’ve found that some may make this about themselves. Some may say something out of love, but unintentionally deliver it hurtfully. Some may discount your news because HIV is no longer the death sentence it once was. And some may simply not be there for you like you need them to be. But at the end of the day, it’s okay. We should always expect the best from our friends and family, but at the same time it is also important that we not put one another up on pedestals. We must keep open hearts, not be afraid to engage in honest dialogue and continue to move forward.
9. Your pain/anger/sadness is valid
This was admittedly the most difficult lesson I had to learn. As the weeks and months went by, I realized just how fortunate I was. When I found out my positive status, it was within months of seroconverting, and so my numbers (both T-Cells and viral count) were within a good range. As I mentioned earlier, I’m on an amazing medication, have great healthcare, a wonderful and caring doctor, am surrounded by a beautiful support system, and I live in arguably the most stigma-free city in the world. So, as lucky, and more accurately, as privileged as I am, how could I possibly struggle with this? If I had been born 30 years earlier, HIV would likely have progressed to AIDS and killed me. If I lived in a different part of the country, it might be much more difficult to be open about my status. In fact, in many parts of the country, where the stigma is so profound, perhaps I wouldn’t have been tested at all. And don’t even get me started on what my chances would be if I lived in a different part of the world, where access to care and life-saving meds aren’t even an option.
And so, with all these thoughts flooding my brain, I began to become angry with myself. I was experiencing a sadness that I did not feel I had earned or deserved. But here’s the thing: While it’s good to keep things in perspective and not wallow in self pity, it’s also important to acknowledge your emotions, whether sad, anxious, depressed, numb or something else entirely. Stop being angry at your anger. It’s there for a reason and you shouldn’t discount it.
10. Silver linings make all the difference in the world
This has been a challenging, and at times, flat-out shitty year — there is no denying that. But throughout all the stumbles, I am grateful for some of the things that have come out of it.
I have met some of my closest SF friends directly and indirectly because of my new status. I reconnected with an ex who, after I informed him of my status, became one of my biggest champions and flew out to see me in that first month. I started doing yoga. I jumped out of a plane. I was featured in a “live commercial” for Pop-Up Magazine. I climbed a mountain. A pretty damn big mountain. I started to break down emotional walls I had built up over the years. I convinced two guys to begin PrEP. I began telling those who I love just how much they mean to me and how thankful I am to have them in my life. And one week ago today, I announced to my immediate support system that I would be doing AIDS LifeCycle in 2017, the 545 mile, 7 day bicycle ride from SF to LA in June to celebrate my one year anniversary. In only seven days, this small group of individuals has left me completely speechless and brought me to tears one last time this year, by managing to raise an unbelievable $7,076, which will go to support the SF AIDS Foundation and LA LGBT Center in their continued commitment to fighting this virus.
But perhaps most importantly, my new status has in a surprising way helped to repair my relationship with my parents — a relationship that had suffered after my coming out as a gay man over a decade ago. It’s ironic to think that it took another coming out to repair the damage following the first, but then that’s Life, that silly broad.
Individuals often say they wish they could be at their own funeral so that they could hear what their friends and family had to say about them. In a weird way, I’ve been fortunate enough to experience this sentiment at 32. The words of support, love and encouragement from my family, both blood and chosen, have given me the strength to come out (again) today.
On New Year’s Eve 2015, I remember thinking: “I wish I could just fast forward to New Year’s Eve 2016” — and that was before I knew all the other global/political bullshit this year would throw our way. But this has become yet another turning point in my life, one that while painful at times, has brought me to where I am today. And I like that person. So for that alone, thank you 2016.