Without a doubt, receiving an HIV diagnosis can be overwhelming. Though I maintained a stoic countenance after my physician delivered my results, internally, my thoughts felt as if they were exploding. Out loud, I responded to the news with a derisive, “Shut up. No, I’m not”—but silently, where no one else but I could hear it, my heart was screaming, “This is forever. How could this happen? I’ll never have sex again.”
That last part was a ridiculous pronouncement made in an attempt to punish myself. I felt ashamed and decided that if sex was to blame, I’d never have it again. It was a glib solution to a nuanced problem. Though my life had not otherwise changed, after receiving the diagnosis, my world started to feel as if it were spiraling out of control. In an attempt to establish order, I began to impose severe restrictions upon myself.
I decided that, even though I loved dancing, I would retire from performing—because my energy needed to remain focused on HIV. I would no longer eat potato chips because I erroneously believed that becoming a bland eater would help to mollify my violent feelings. And though it was my favorite color, I declared that I would no longer wear anything blue, because it might convince me that everything was OK―and I didn’t think that I’d ever be OK again.
Like a Punch to the Face
These sudden pronouncements were a mixture of self-sabotage and attempts to hold myself together, as well as a clear sign that I needed to talk to someone. Casually mentioning them to caregivers, as I’d been doing for a few months, was my subconscious cry for help, though only one doctor noticed. And as soon as she did, she informed me that my words and decisions were the wrong things to tell myself, and at the wrong time.
“Gurl, that is the stupidest shit I’ve ever heard,” was what she actually said after I declared that I was never having sex again. “You’re too young to be saying dumb shit like that.”
In one quick swoop, she transformed from professional physician to “Auntie no-nonsense,” snatched my wig, and set me on the pathway to stop punishing myself and focus on what I wanted from life instead. I was so shocked at having my pity party crashed that I clutched my imaginary pearls and replied, “I beg your pardon? Is this really appropriate?”
But this doctor/Auntie wasn’t having any of my “lady of the manor” affectations. “Listen, I’m old enough to be your mama, so Imma say it like it is,” she continued. “You got to cut that shit out. HIV is not the worst thing that can happen to you. We caught it early enough, and as soon as we get you into treatment, you’ll be fine.”
Feeling contrary and a little peeved that she was interrupting a sadness that I felt I deserved, even though I agreed with her that I was sulking, I responded, “But, I’ll have to take a pill for the rest of my life. For. The. Rest. Of. My. LIFE!” That’s when she snapped on me. “Do you have diabetes?” she asked. “I’m not about to have a competition with you, but let me say―I wish my diabetes was as manageable as your HIV. Especially with the medicines they got now. I see you’re gonna have Triumeq. That’s a good pill.”
When I was diagnosed in 2015, Triumeq was considered one of the best antiretroviral therapies (ART) because it caused no side effects in most people and could be taken at any time of the day, with or without food. My physician held onto that point in her tough-love speech. “Do you know how hard it is having to watch every damn thing you eat all damn day and night long?” she lamented. “And even when you eat right, you still don’t know when or if you’ll need a damn shot of insulin? I feel like I need a shot now. You want to watch me take an injection?”
Accepting the Help You Didn’t Know You Needed
My physician’s oversharing and breach of professionalism knocked me silent. Interpreting no response as compliance, she interrupted our session and gave herself a shot. After she finished, she told me that she actually had a pump that made delivering insulin easier, but that she wanted me to see that regardless of how I felt, managing HIV would be much easier than I thought.
I realized she hadn’t interrupted my session—instead, she was giving me the space I needed to speak my fears out loud. It was tough love and probably unprofessional, but it did something no other physician up to that point had attempted: broke through my defense mechanisms.
“I’m not trying to dismiss how you feel,” she assured me. “But you got to stop saying things like that. Shoot. It’d be a damn shame if you stopped having sex because of this.” My physician-turned-mentor then acknowledged my feelings of grief. “I know you’re sad, and I’m sad for you too,” she said. “But I’m grateful that you’re alive and that you’re here to get help. Do you want to try talking to somebody? ’Cause it sounds like you could use therapy?”
I thanked her for her candor but rebuffed the attempt to recruit me into therapy. I wasn’t ready to consciously make that commitment yet. As I was leaving her office, she gave me one of the most important pieces of advice I’ve received since getting my diagnosis:
“You don’t have to make snap decisions,” she began. “Now is not the time to be deciding what you are going to do forever. You’re still figuring things out, so try giving yourself time. But even if you do decide to do something forever, you don’t always have to be right. You can decide you’ll never have sex again and change your mind tomorrow. But the next time you think about ‘never doing something again,’ I’d like you to write about it so that you can see what’s going on in your mind in front of you on paper. We carry so much around in our heads sometimes, and that can be overwhelming. When I’m feeling too many thoughts banging inside my head, I write them down, and that helps me to decide what it is I’m really trying to do.”
Give Yourself Time and Seek Support
My physician’s words were nothing extraordinary, nor did they promise to magically resolve my trauma. But they did offer me a system for addressing my thoughts. Following her advice to write down my thoughts helped me to see that I did not have to commit to anything until I felt ready to do so.
People like to say that life is too short to be miserable, but living with HIV, I have found that life feels incredibly long when you’re weighed down with dejection. And starting off your diagnosis by making snap decisions about forever is a recipe for despondency. If you’ve been diagnosed with HIV, instead of telling yourself that you have to know what the rest of your life will look like “right now,” relax and remember that you have time.
According to David Malebranche, M.D., M.P.H., an HIV doctor living with and treating people living with HIV, it is key to respect your process, rather than rushing yourself to get over the trauma of being newly diagnosed. He recalled a patient who was still struggling half a year after learning that he had seroconverted. Malebranche said that rather than deliver empty platitudes such as, “everything is going to be alright,” he told the person, “Dude, you're only about six months into this. You're allowed to grieve."
Malebranche added that regardless of how long it takes one to overcome their initial grief, the important thing to remember is that "you can't let yourself get stuck. I want my patients to feel their way through this and to remember that the world has a purpose for them.”
That purpose may not reveal itself immediately. In my case, writing about my feelings developed into my becoming a full-time journalist. That didn’t happen overnight, but I can see that once I embraced that I was allowed to figure things out and experiment with my plans—in the same way that I had before I seroconverted—the things I wanted to do with my life became much clearer.
If you feel that you are struggling, or would like to find someone to listen to your feelings, I suggest contacting an AIDS service organization or community health organization. Let them know what you are going through and that you’d like help to figure out what to do next.
And don't panic if you are without insurance; ask to speak with a health insurance navigator for help in securing coverage through the AIDS Drug Assistance Program (ADAP). ADAP not only helps pay for medication for people living with HIV and AIDS who are uninsured and under-insured, it can also be applied toward mental health services.
And remember, HIV sucks, but living with it doesn’t have to. While untreated HIV can be fatal, people living with HIV who are in treatment can do anything—including lead even healthier lives than seronegative people. After starting my treatment, I walked back my snap decision to stop dancing and returned to performing as a professional dancer again. And after I decided to retire from dancing, writing about my feelings helped lead me to my current pathway. It could possibly help do the same for you.