In a recent interview with TheBody explaining why therapy is essential for anyone who has been newly diagnosed with HIV, Nathaniel Currie, D.S.W., LCSW, pointed out that “dealing with a positive result mirrors the five stages of grief: denial, anger, bargaining, depression, and acceptance.”
But the manifestations of grief are not always recognizable. Because they are often the only logical response to certain life events, many people do not see them as signs that they may need help. According to Currie, successfully navigating through these stages during one’s HIV diagnosis requires “information, communication, emotional support, guidance, and direction.”
I recently came to the conclusion that I was still locked in my own grief cycle around my HIV diagnosis and asked Currie to walk me through these five stages so that I could begin to unpack what I needed to do in order to move forward.
My first reaction was a classic case of denial. As soon as my doctor delivered my results, I told her to shut up and that I wasn’t positive. “This is that moment when you’re shocked,” Currie says. “We call it shock, but it’s actually denial—avoidance, confusion, elation, shock, fear.” Often when people are in denial over an HIV-positive diagnosis, they say, “I don’t believe you. Are you sure? Let me see the computer, and I’ll be the judge of that. I’ll just wait for another blood test.”
“It’s the feeling of, ‘I can’t believe this is happening,’” Currie explains. “You hear the words, but you haven’t made any true connection to them.” There is also the fear of what is going to happen and elation. “Elation is really important to talk about,” he says, “because it seems out of place.”
It is similar to learning that a family member who has been suffering with a terrible illness for a long time has finally passed, and “there’s a little excitement that they won’t suffer anymore.” Currie explains. “That’s important when we think about an HIV diagnosis, because there is a moment of relief. Like, ‘Now I don’t have to worry about getting HIV anymore.’ Or, ‘What I thought turned out to be true.’”
It is a moment that I have witnessed when accompanying people to get tested—a level of relief that the fear of HIV is no longer hanging over their heads. Currie says that his clients have told him, “I don’t have to worry about getting tested and being nervous all the time.” In my experience, this relief is always short-lived, because no one I know actually wants to have HIV; the brief flicker of elation fades and denial returns.
I progressed to the next step almost immediately. I rudely turned down my doctor’s offer to talk and launched into a bitter diatribe. The anger felt empowering to me. I used it to bust my way out of feeling like a victim. Currie says that he has seen many of his clients tear themselves down or curse and blame their sexual partners.
“It’s frustration, irritation, and anxiety,” he explains. These feelings may not fit the narrative of how one is supposed to act, but, “HIV diagnosis often means grieving a loss. And loss can make people angry.”
My HIV diagnosis has included lost employment, relationships, opportunities, and friendships with people who look down on people living with HIV. My response to those situations has always been, “If you think you’re better than anyone with HIV, I have HIV. So you can go fuck yourself in the eye with a spoon.” I react that way because I’d rather get mad than feel sorry for myself. But it’s mostly because I don’t want to deal with other people’s abuse.
Currie says that this “acting out and saying outlandish things is still part of the healing journey.” It also transitions into bargaining, arguing, and struggling to find meaning.
Currie says that this search for meaning sounds nicer than it actually is, because dealing with “stigma and oppression in a culture that already doesn’t value you is exhausting.”
I had a difficult time with the pointlessness of my having tested positive. I told a friend that I’d “done everything right.” I never did drugs, and I always used safer-sex options when I slept with strangers. Plus, I was in what I thought was a monogamous relationship.
After receiving my diagnosis, I rationalized that I could not be positive until my partner’s HIV-positive status was confirmed. In my head, if he hadn’t seroconverted, then I couldn’t have either. I was bargaining.
I promised the god that I didn’t believe in that I would double my volunteering and charitable donations if it wasn’t true. Then my partner tested positive. Still I bargained.
I was too healthy, I argued with no one. I’d just finished producing a three-week-long concert series with two performances every night, while struggling with a concussion. There was no way I could have done all of that if I’d had HIV.
But it was all bargaining, and nothing I did or promised to do could change the facts of my status.
Currie says that depression can manifest as a person feeling overwhelmed, being hostile, or avoiding things and trying to run away from their problems.
“Running away is important to think about when talking about HIV, because it can mean running away from medical, pharmaceutical, or therapeutic care.” He says that for some people, it is an attempt to avoid dealing with their test results or the reality that their life has changed.
“It can show up as avoiding the need to take medication every day, or always having to have a certain type of insurance, or having to take on a new level of responsibility for living. For some people who have little or no experience, it’s easier to cope by pretending nothing is wrong, or knowing that something is wrong but not acknowledging it.”
There was a point where I felt like I just couldn’t cope. I was a professional dancer when I received my diagnosis—and aside from yearly HIV tests, I never went to the doctor. I did not need to, and I did not want to.
The consequences of not engaging with one’s care or taking antiretrovirals are catastrophic. Still, managing that burden by yourself can feel insurmountable. “That’s why it’s important to have a therapist,” Currie says. “So that you are fully engaged with supportive services and resources.”
Going it alone can trigger helplessness, especially when facing down bureaucracy, insurance authorizations, scheduling, or other impediments to care and medication. There is also struggling with the insane costs for services that you need to survive.
My initial medication was Triumeq (abacavir/dolutegravir/lamivudine), which cost over $3,000 for a 30-day supply in 2015. During my three-month-long battle to get into the AIDS Drug Assistance Program (ADAP), I felt so overwhelmed that at one point I decided to never leave my bed again. Luckily, my landlords were part of my care circle and stepped in to pull me out of my funk.
The feeling was depression. It can appear in many different ways, including isolating yourself because you want to tell people about your status but are afraid of rejection. There is also the fear of being rejected by one’s community, especially when religion is part of the equation.
Currie says that religion played a huge part in how one of his clients struggled with depression. This patient was a Black Muslim man living in a multigenerational home in Baltimore. The gentleman was shocked to discover that he had seroconverted, because he was a top and not anally receptive; he believed that this meant that he was not gay and therefore incapable of “getting AIDS.”
Currie says that he explained to this client that it was HIV that they were dealing with, rather than AIDS, and that though the likelihood of transmission is greater for bottoms—people on the receiving end of sexual penetration—those delivering the penetration are also at risk if they do not employ safer-sex options such as condoms or pre-exposure prophylaxis (PrEP).
This patient resolved not to have medication in his house, because he feared a family member discovering that he was involved in sexual activity with other men, or that he was living with HIV. This man believed that he would have been shunned by his entire family and religious community if anyone found out, because being Muslim meant that homosexuality was completely unacceptable.
It’s a reminder that HIV stigma can kill in more ways than one.
Acceptance involves exploring one’s options, putting new plans in place, and moving forward with one’s life. Though it is a wonderful place to be, Currie notes that “getting to acceptance can take a long time. For some people, it’s a few months; for others, it can take years or even their entire lifespan.”
I have found that disclosure has helped me get closer to a place of acceptance. I am still struggling with aspects of my diagnosis, but any feeling of shame or fear that my HIV diagnosis will impede my ability to lead a wonderful life faded four years ago, thanks in large part to my friends and to my former advocate at GMHC, Angel Soto.
Not everyone is so lucky, particularly because feeling safe enough to disclose one’s status is a privilege. Currie cautions his clients that “you can’t take it back once you tell someone, so you have to be really discerning about who and why you’re telling someone.” He likens it to advertising a party. “Once the flyer is out there, everyone knows, especially if we’re dealing with social media and the internet.”
He continues, “This is an important conversation, especially for clients who are in vulnerable situations, such as living in poverty or in unsafe neighborhoods, or who have unstable housing.” Currie says that one of his clients disclosed their status to a roommate, and the next thing he knew, their entire neighborhood and landlord knew about it. “The landlord didn’t want him in the house anymore, and because he wasn’t on the lease, he had to leave.”
Currie says that clients have also shared that after telling trusted friends, those individuals disappeared from their lives. Social ghosting and abandonment feel “like a betrayal, and that is very catastrophic to a person’s emotional psyche. You should only tell people that you feel you can trust forever; people who show that they respect and love you.”
When it comes to embracing one’s status, some people waver back and forth between depression and acceptance, because they don’t have a safe living environment or network of supportive friends. This is another reason why having access to proper mental health services is essential. It helps ensure that you will have someone advocating for you and assisting you as you move through tough moments.
Even more importantly, when it comes to disclosure and seeking acceptance from others, one cannot guarantee how certain people will react to your diagnosis. But with a properly licensed clinician, social worker, or support from an AIDS services organization or community clinic, you are guaranteed a variety of helpful alternatives from people who have been trained to deal with difficult circumstances and who want to get you back to living your best life. Most importantly, if they mess up, there is an apparatus in place to hold them accountable and find an even better person to assist you.
I am stepping back into therapy so that I can complete my grief process regarding my HIV diagnosis. I have a good life, but there are a number of things that I never processed, and I know that I deserve to lead a life that is unencumbered by that drama. So do you. So do we all.
If you are living with HIV and have never engaged with a mental care specialist, try scheduling a visit with your social worker or advocate. If you do not have a social worker or advocate, try calling the toll-free HIV/AIDS hotline for your state for help finding a local service organization that deals directly with sexual and mental health. You might not feel that it is necessary, but I think we can all benefit from talking to someone about the way we feel, even if it is only to reflect on how far we’ve come in thriving while living with the virus.