Supporting Someone Living With HIV
HIV remains a significant public health crisis in the United States and around the world. According to the US Centers for Disease Control and Prevention (CDC), in America today, there are an estimated 1.1 million people living with HIV. Lack of funding for public health programs and general ideological opposition to sex education has made it challenging to stop HIV in its tracks altogether. Though the number of new diagnoses each year has steadily fallen in the general population, gay and bisexual men still make up 55 percent of the people who are living with HIV in the United States.
Based on current diagnoses rates, 1 in 6 gay and bisexual men will be diagnosed with HIV during their lifetime. This number is even higher for Latino and Black men who have sex with other men. Members of the transgender community have also been struck by the HIV epidemic, with transgender women having 49 times the chance of living with HIV than the general population. A lack of federal protections against discrimination based on sexual orientation or gender identity has contributed to the spread of HIV. LGBTQ people who are afraid of the potential consequences of discrimination, such as job loss, loss of medical insurance, or homelessness, may engage in risky behaviors that elevate their chances of contracting the illness. For example, many transgender women turn to sex work to meet their financial needs, making them particularly vulnerable to the risk of infection. Anti-LGBTQA+ mindsets also contribute to the spread of HIV by preventing individuals from getting tested or treated, out of fear of persecution and stigma.
HIV, or human immunodeficiency virus, weakens a person’s immune system, making them more susceptible to illness and infection. The virus attacks the body’s CD4 cells, also known as T cells, which are a type of white blood cell critical to our immune systems. These cells help the immune system to fight infection and disease. In the first few weeks of the infection, people experience flu-like symptoms. During this stage, people are highly contagious but may not know that they are even sick. After this first stage, people go through a latency period during which they don’t feel ill and may not have any symptoms whatsoever. This period can sometimes last over a decade, though for many people, this period may progress more quickly, especially in the absence of medication. People who take HIV medication (antiretroviral therapy) can eventually suppress the virus to such a degree that they essentially cannot transmit the virus. Though there is no cure for HIV, with the right medical care, HIV can be controlled. Many HIV-positive people live nearly as long as those who do not have the disease.
Still, despite all of this progress, there is quite a bit of fear associated with an HIV diagnosis. Up until the mid-1990s, an HIV diagnosis was synonymous with a death sentence. At that time, the illness would rapidly progress to AIDS (Acquired Immunodeficiency Syndrome), and there was even less support and compassion for patients than there is today. Then and now, the most important thing to do if your loved one has been diagnosed is to support them as much as you can.
When your loved one has first been diagnosed with HIV, it is essential to understand what it is they are about to go through. Ask them questions with an open and empathetic mindset, and seek out education on your own on what living with HIV truly means. If it’s appropriate, you can also discuss the possibility of helping them manage their HIV.
If your loved one is also your sexual partner, it may be that you’ll need to get tested yourself. If you have concerns that you’ve been infected, schedule an appointment with your physician or at a clinic. If you’ve been told by your loved one that they’ve been diagnosed with HIV and that they’ve been living with it for some time, this is a clear indication that they’re trusting you with sensitive information. If they’ve confided in you, don’t break their trust by sharing this information with other people.
When the time comes for them to tell others, know that this will be a nerve-wracking and exceedingly difficult moment for your loved one. You never know how their friends and family will react, so offer to be there with them when they deliver the news. This will give you the chance to be a bolster for them when they need it and to act as a buffer in a potentially tense situation. This can also allow you to educate your friends on how they can best support your loved one.
Let your loved one know that you’re there for them if ever they want to talk about things. If they don’t, respect this decision and know that they will approach you when they are ready or when they are ready to talk. Never pressure them into doing something they do not want to do. This is important so that they can feel some level of control over their life at a time when their life feels very much out of their control. Show them that you’re engaged and interested and do your best not to make them feel ashamed. If you have concerns, it’s perfectly fine to share them with your loved one. This will signal to them that you care and that you’re invested in their wellness.
Offer to help in concrete, practical ways. Offer to take them to their doctor’s appointments or to lay out their medications for them. You may also want to help them locate support services. There are many local and online support groups that they may not have considered that would help them through the initial stages of grief and anger that can accompany a diagnosis. Most of all, encourage them to adhere to their doctor’s prescribed treatment plan while they are sorting out all of the complex emotional and psychological aspects of their new diagnosis.
What to say
When first learning of your partner’s HIV-positive status, it may be difficult to know what to say. Here are a few places to start:
Thank you for trusting me enough to tell me
Thanking your loved one for opening up and being vulnerable is a great place to start your conversations about their health status. Whether it’s a new diagnosis or they’ve been living with it for a while, it can still be nerve-wracking to disclose this information to new people. Saying thank you acknowledges the bravery it took to share the information. If the HIV-positive person in your life is also your romantic partner, you can thank them for thinking of your well-being enough to disclose their status to you. This version of the “thank you” can be a great way to open up a conversation about how your relationship will move forward and develop.
How can I help?
Especially if the diagnosis is new, your loved one may be feeling overwhelmed and unsure of how to cope under these new, probably frightening circumstances. By offering to help you are acknowledging that you recognize their possible need for support. You’re letting them know that you care and that you want to contribute to their health and well-being.
How are you feeling?
This may seem like a straightforward question, but giving your loved one the chance to tell you what they’re experiencing can be a cathartic experience for both of you. Allow them to speak, provide them with the silence they need to consider their feelings, and only ask questions when you feel they’ve finished speaking. Be prepared for a variety of emotions. Your loved one may express that they’re afraid. They may say they feel ashamed or guilty. They may cry. These are all moments you should be prepared to experience with them. As long as you don’t shy away and you remain steadfast in your support, they’ll feel safe and seen, two invaluable feelings in this time.
This changes nothing
So many things are about to change in your loved one’s life. They may even lose the support of some of their friends and family due to this diagnosis. Clearly stating that you love them and support them, regardless of their status, will help mitigate your loved one’s fear of rejection and fear of discrimination.
What not to say
It can be tempting when first confronted with your loved one’s diagnosis to rush to anger and blame. This is not a helpful or supportive reaction. Try to avoid the following kinds of statements:
How could you have been so reckless? Why didn’t you use a condom?
Though your loved one may have been exposed to HIV through sexual behavior, it’s also possible that they contracted the virus through needle use, from a blood transfusion (though this is uncommon), through exposure in their workplace (especially if they work in law enforcement or the medical field), or even from their mother during birth. Don’t make assumptions about the source of the virus. Additionally, if they did use a condom, it is still possible to have contracted the illness. HIV can be spread through pre-seminal fluid, a fact that few realize, and that fluid can be released before a condom being applied. If your loved one did in fact contract the virus due to lack of condom use, asking them this question when they are already very likely blaming themselves can feel like an attack, and it’s unnecessary and harmful.
Who gave it to you?
This question can be awkward and uncomfortable for many reasons. In one way, it is like pinning the blame on your loved one for being exposed to the virus. If your loved one is your primary sexual partner and, this is a new diagnosis, you may not want the answer to this question. Though this is an emotionally difficult time for both of you, this information is not relevant to the more significant issue at hand and will only serve to make both of you feel much worse.
Don’t worry, HIV isn’t a big deal anymore
There is a high likelihood that your loved one is aware that there are many more treatments for HIV than there used to be and that it’s possible to live a very long, essentially healthy life while HIV positive. However, being diagnosed with HIV can be very scary and is still very much cause for concern. Though you are trying to be supportive by encouraging your loved one not to be worried, you’re inadvertently invalidating the genuine fear they’re likely feeling. Not only that but this illness will change their way of life. Your loved one will have to take medications every day, they’ll have to be more mindful of their exercise and diet, and they’ll have to avoid situations that could make them sick. This illness will also come with a plethora of emotions ranging from anxiety to shame to depression to guilt. This diagnosis is very much a big deal to your loved one, and it is vital to recognize its magnitude.
I know how you feel, I’ve had an STI
Being diagnosed with any STI (Sexually Transmitted Infection) can be jarring and traumatizing. However, there’s a clear difference between a readily curable STI such as gonorrhea and a life-long illness such as HIV. Saying that you know exactly how your loved one feels is not only nonfactual, it invalidates the way your loved one is currently feeling and brings the attention back to your own experience. Though it may feel that you are trying to sound empathetic, in truth, this kind of statement is to be avoided.
Can you still have sex? Is that something you should even do?
There is already quite a bit of shame and guilt that comes along with an HIV diagnosis, and your loved one is likely already concerned about the safety of having sex in the future. This kind of question can validate those concerns and confirm their fear of rejection based on their diagnosis. The truth of the matter is, it is entirely possible for HIV-positive individuals to have sexually gratifying relationships. If your loved one is your partner, it would be beneficial to know what you can do to protect yourself.
Dating someone with HIV
As we’ve discussed, there have been major advancements in HIV treatment and prevention. Testing for HIV is reliable and faster than ever, and there are now ways to prevent the spread of HIV beyond condoms. If you found out your partner is HIV positive after already having slept with them, for example, you can take Post-Exposure Prophylaxis (PEP). You can take PEP within 72 hours of exposure to HIV. It’s a drug course of 28 days, and you must complete all 28 days’ worth of medication. While PEP isn’t a “sure thing,” it does significantly reduce your risk for infection.
If you’re dating someone who is HIV positive, using condoms is still a good idea. However, there is also now an oral medication option known as Pre-Exposure Prophylaxis (PrEP) that you can take. PrEP typically involves taking a pill once a day called Truvada. It’s highly effective at preventing the contraction of HIV, reducing the risk of infection by more than 90 percent. It can be used by men who have sex with other men as well as intravenous drug users and heterosexual men and women who don’t use condoms regularly or have sex with high-risk partners. While PrEP is highly effective, it isn’t an excuse to engage in unsafe sex. It’s still highly encouraged to use condoms while engaging in sexual activity with new partners or with your HIV-positive loved one. It’s also important to know the risk levels of different kinds of sex. For example, anal sex increases the chances of HIV over other types of sex while it’s rarer to contract HIV through performing oral sex. As mentioned, using a condom made of latex can also help in reducing your risk of infection. To avoid condom breakage, consider using a lubricant that is water or silicone-based.
It is a common misconception in the gay community that an HIV-positive partner is more unsafe or reckless. Firstly, a landmark study has found that gay men who suppress the virus in their body through an antiretroviral therapy (ART) regimen effectively cannot infect their sexual partner(s). Moreover, many HIV-positive men (and women) are more protective of themselves due to their risk for ancillary viruses and infections. Your HIV-positive partner will likely be mindful of their diet and their overall health. If they’ve told you from the outset of your relationship that they’re positive, they’re probably concerned with the well-being of their partners as well. If this is the case, they will also manage and monitor their HIV by taking their medication, putting you less at risk.
If you’re in a long-term committed relationship with someone who has only recently been diagnosed, you may find that you’d both benefit from speaking with a therapist who specializes in couples therapy and who has experience working with HIV-positive patients and their partners.
Individual or Couples therapy
If you and your partner are struggling with your partner’s diagnosis, meeting with a couples therapist is a great idea. If you have concerns about being infected, if you’re personally struggling to cope with the diagnosis, if you’re having difficulty making decisions as a couple, or if this diagnosis is an indication of some form of infidelity, individual and couples therapy can help. Working with a therapist with expertise in LGBTQA+ issues and chronic illnesses can help you negotiate the tensions and communication difficulties that can arise with a positive diagnosis.
If your loved one’s diagnosis is related to an act of infidelity, you may find yourself torn between two emotional decisions: to leave your partner or to support your partner through this difficult time. The good news is that many relationships can survive both infidelity and an HIV-positive diagnosis. When working with a qualified couples therapist, both you and your partner will be given non-judgmental compassion and a safe place in which to discuss your fears, worries, and feelings. As difficult as it may be, it’s essential to recognize that your partner will also be feeling scared and lost at this moment. They’ll likely be experiencing heightened anxiety and depression, and they’ll very probably be experiencing guilt, especially in light of their diagnosis. Try your best to have empathy for their position in this while also having compassion for yourself and recognizing the trauma you’re feeling. Your own individual therapy can be critical for you to sort out your emotions and reactions. Forgiveness isn’t an overnight thing, but through counseling, you may be able to salvage the relationship.
If your loved one’s diagnosis is not related to an act of infidelity, it is still a good idea to enter couples therapy and individual therapy. You’ll both be entering a new stage of your relationship, one in which a chronic, life-long illness will be playing a role. You may find that making decisions about your future as a couple is more complicated than usual and that communicating your feelings, needs, and wants is more challenging. It’s key to remember that you’re a team, and though your partner has been diagnosed with HIV, HIV doesn’t need to control your lives as a couple. Working with a therapist to help you as a couple to develop new, stronger lines of communication can only serve to improve the two of you feel more grounded, trusting, and in sync in your relationship during this challenging moment.
As you’re supporting your loved one through their illness, it’s important to remember to take time for yourself. After all, you can’t pour from an empty cup. If you find yourself feeling anxious and drained, consider meeting with a therapist to discuss some of the feelings you’re experiencing. You may also want to reach out to local support groups for partners of HIV-positive people. You may find that speaking to medical professionals about your loved one’s diagnosis and learning more about the illness itself to be helpful as well. Make sure to create a space for yourself to feel whatever it is you need to explore, which is likely to include anger, sadness, helplessness, and determination. These are all valid emotions that you should give yourself room to feel. Even as you’re making sure your loved one is taking their medications, maintaining a proper diet, and exercising, make sure that you too are sleeping well, eating right, and exercising. You’ll find that when you take care of yourself, you’ll be an even better support to your HIV-positive partner or friend.