In the first few days or weeks after finding out you are HIV-positive, you’ll have a lot of basic questions and you’ll need some straightforward answers to help stay healthy, protect yourself and others, and move forward with what should be a long, happy life. Here’s what we know.
1. Is it possible I got a false positive on my HIV test?
When your initial test comes back positive (unless you’ve done the at-home test) you should be offered a confirmatory test, basically a second test to make sure you’re HIV-positive. The likelihood of two false positives is extremely rare. If you took the at-home test, it’s a good idea to go to a doctor or clinic to do the second test. Sadly, false-negative test results can happen too, so if you come up positive and your partner comes up negative, be cautious and have your partner retest. According to AIDS.gov, the likelihood of a false negative depends on when you might have been exposed to HIV and when you took the test: “It takes time for seroconversion to occur. This is when your body begins to produce the antibodies an HIV test is looking for—anywhere from two weeks to six months after infection. So if you have an HIV test with a negative result within three months of your last possible exposure to HIV, the CDC recommends that you be retested three months after that first screening test. A negative result is only accurate if you haven’t had any risks for HIV infection in the last six months—and a negative result is only good for past exposure.”
2. How did I get HIV?
This is a question you’ll get asked exhaustively, but right now you’re probably just asking yourself. The bottom line is that the main risk is having unprotected anal sex or (for women) vaginal sex or sharing needles with an infected person. It’s possible but quite a bit less likely that you got it from oral sex. The CDC says it’s also possible to acquire HIV through exposure to infected blood, transfusions of infected blood, blood products, or organ transplantation, “though this risk is extremely remote due to rigorous testing of the U.S. blood supply and donated organs.”
3. Can “tops” get HIV?
Actually, there’s some truth to the assumption that male “tops” (insertive partners in anal sex) get HIV less. The insertive partner in both anal and vaginal sex is less likely to contract HIV—in the case of anal sex, tops have 86 percent reduction in transmission, according to a 2012 study—but that still means tops can get HIV from sex.
4. Does being HIV-positive mean I also have AIDS?
Absolutely not. In the U.S., the majority of people living with HIV will never develop AIDS, the most advanced stage of HIV disease. HIV is the virus that causes AIDS, but for most people, proper treatment and regular medical care to keep your immune system strong will prevent you from ever developing AIDS. Remember, an HIV-positive test result means only that: You have HIV.
5. Am I going to die?
No, probably not anytime soon. There can always be complications, just as there are with any chronic condition (like diabetes, for example), but generally, with current medications, people with HIV are living near-normal lifespans. You will be susceptible to the same medical conditions that affect all people as they age, and some experts say that people with HIV will experience some of these conditions associated with aging (like osteoporosis) sooner because of the lifesaving antiretroviral drugs you need to take.
6. What do I tell people about how HIV is transmitted?
Let’s start with how it is not transmitted. Since the virus cannot survive outside the body, you cannot get it from toilet seats or shared cups or utensils. You can’t get it from kissing or from spit, since it’s not transmitted in your saliva. It is also not transmitted in sweat or urine. You can’t get it from a swimming pool, hot tub, sauna, mosquito or rodent bites, tattoos, or ear/body piercings. Only four bodily fluids are known to carry HIV in quantities concentrated enough to infect another person: blood, semen, vaginal fluids, and breast milk. According to the Centers for Disease Control and Prevention, it is one of these fluids from an HIV-positive person that has to come in contact with a mucous membrane or damaged tissue, or be directly injected into the bloodstream (from a needle or syringe) for HIV transmission to possibly occur.
7. Who is at higher risk of HIV infection?
Across all ethnicities, in the U.S. the group most affected by HIV infection is gay and bisexual men and other men who have anal sex with men (but for some reason don’t identify as gay or bi, dubbed MSM). Transgender women, especially women of color, are at a significantly higher risk as well, though exact numbers aren’t known because in many studies they are included, erroneously, in the MSM category. Black and Latino men and women and injection drug users have higher risk rates, but of course anyone (straight, gay, black, white, whatever) who has unprotected anal or vaginal sex is at risk.
8. Does this mean I have to stop having sex?
No, not unless you want to. But we encourage you not to stop. Orgasms can be wonder drugs in themselves: They help you sleep, boost your immunoglobulin levels (which fight infections), and reduce stress, loneliness, and depression. There are ways to protect yourself and your partner, however, including consistent condom use, PrEP, serosorting, and keeping your viral load undetectable. One tip: If you use lube during vaginal or anal sex, avoid two ingredients: polyquaternium and polyquaternium-15, both types of polymers, which may increase the possibility of HIV transmission.
9. What about oral sex?
It is far less common but possible to transmit HIV through oral sex, especially if you are a man and you ejaculate into someone else’s mouth. If you have HIV and your partner performs fellatio on you but you do not ejaculate in that person’s mouth, you have an extremely low chance of passing HIV to them. HIV transmission through “fellatio without ejaculation can happen, but it is exceedingly rare,” says Thomas Coates, Ph.D., a professor of medicine and director of the University of California, San Francisco, AIDS Research Institute and the Center for AIDS Prevention Studies. “It’s not ‘no risk,’ but it’s relatively low-risk.” When ejaculation occurs during fellatio, the risk of HIV transmission rises; researchers debate what the rate of transmission is but most estimates are between 1 and 10 percent, but you lower that to almost no risk if you pull out for the money shot. And if you are a woman, having someone perform cunnilingus on you is extremely low-risk as long as you are not menstruating.
10. What is “Treatment as Prevention?”
A couple of large-scale studies, on both gay and straight couples in which one was HIV-positive, showed that a person taking medication that reduces the amount of virus in their blood (that’s their “viral load”) to an undetectable level has only a 4 percent chance of passing HIV along to their partner, even if they do not use condoms. Any poz person will tell you one of the most frightening parts of being poz is the concern about infecting others; if you get yourself healthy enough and stay that way with an undetectable viral load, you actually make yourself safer to your partners than if you use only condoms.
11. What is PrEP?
Right now PrEP refers to Truvada, a combo pill that’s given in one particular configuration to people with HIV and in another configuration to people trying to prevent HIV. In the latter, it’s taken daily to prevent infection and has been approved for use in anyone at high risk (your partner would be considered high-risk now that you are poz). PrEP is extremely effective when taken correctly, but doctors still recommend you use condoms for added protection. (And make no mistake here: no, your partner cannot just take your Truvada if that’s what you’re prescribed; the different combination in your pill’s formulation won’t work and could do them great harm.)
12. Can I still have kids?
Yes. If you’re a woman who is positive, medications can make it so you have less than a 1 percent chance of transmitting HIV to your unborn child. If you’re a man, your sperm will need to be “washed” of HIV and then inseminated into your partner, wife, or surrogate. The main difference for couples is that you’ll need a specialist who deals with HIV, fertility, and insemination. PrEP has also recently been prescribed by doctors off-label to prevent transmission during intercourse when couples are trying to conceive as well. If you want to adopt or foster parent, there are some new protections for HIV-positive parents-to-be that ensure you can’t be discriminated against.
13. I already have kids. How do I tell them?
Many parents worry that telling their kids might place a burden on the children. Mental health professionals say the decision about whether to tell your kids depends on many factors, including how perceptive they are (if there are medicine containers all around, kids will ask about them), how discreet you need to be (asking kids to keep your status a secret is a heavy burden), and how strong you can be for them (some kids will be angry or overly clingy, worried you’ll be dying). For most people, telling their children is the right thing to do. Before you do, learn everything you can about HIV. Your kids have been perfecting the “why” questions since they were 2 years old; this is a moment when there will be a lot of whys and hows. Your doctor or counselor might have ideas about groups or advocates for children, who can also talk to the kids or be a support team for you and the offspring as you go through the coming-out process. Then, says Mark Cichocki, a nurse educator at the University of Michigan’s HIV/AIDS Treatment Program and the author of Living With HIV: A Patient’s Guide, talk in a quiet space, be honest, trust your kids to handle it, and let them express their emotions fully (remember, kids can experience a range of feelings, including guilt, fear, rage, and rejection). This process may take more than one day—it’s the beginning of a conversation in which you should be honest, age-appropriate, and willing to offer both answers and assurances. Kids can impress us with their ability to understand and assimilate information; you just need to have it ready for them. After the crying and talking is done, take them out for ice cream so they remember that this is just another thing that your family will tackle together.
14. What is a serodiscordant couple?
Serodiscordant simply means one of you has HIV and one of you doesn’t. Some gay couples use the term “magnetic couples” to mean the same thing. There’s very little research on how successfully serodiscordant, or mixed, couples cope with the complications of HIV. According to TheBody.com, an online HIV resource guide, “research of this nature tends to measure the most negative aspects of positive/negative couplings, telling us primarily how HIV complicates our lives. It tells us very little about the rewards, the discovery of inner strengths, the emotional ties, the opportunities for developing better communication skills, or the joy generated when a mixed-status couple does create a happy, strong, fulfilling relationship.”
15. So how do we handle being a serodiscordant couple?
What you need to know if you’re a mixed couple is that you can have a happy and healthy relationship, but like all relationships, it requires work and commitment, because love does not conquer all. The HIV-negative partner may want to talk to his or her physician about PrEP; you should talk with yours about achieving an undetectable viral load. Both reduce the likelihood of you transmitting the virus to your partner. Couples might also want to see a counselor who specializes in coping with HIV. Many HIV-positive people fear spreading the disease to their partners, making sex fraught with tension. Many HIV-negative partners encounter disrespect from friends and family members when the other partner’s status is revealed. A counselor can help you work through those kinds of issues and communicate to each other your anxieties, fears, and needs.
16. How many of my previous sexual partners do I need to tell about my diagnosis?
This is kind of a murky area, with debate between activists and public policy experts. You will be asked to notify, or have the health department notify, anyone you have had sex with or shared needles with since your last negative HIV test or, if you’ve never had one, the most recent sex partners (say, in the last year). Your partner(s) will need to be tested now and, if the test is negative, again in three months (the window period between infection and when it actually shows up on a test). According to the New York Department of Health, how far back in time known partners should be reported is determined on a case-by-case basis depending on such factors as the approximate dates when you believe you were exposed and became infected and how willing (or able) you are to dig up those names and contact info, with the priority on current and recent partners. The federal Ryan White Care Act requires states to make a good-faith effort at notifying current spouses and anyone who has been the HIV-positive person’s spouse within the last 10 years. Therefore, spouses within the last 10 years, if known, should be notified, unless you’ve had a negative HIV test result since then. Do know that public health departments and clinics are not supposed to pressure you for this information and they cannot withhold your test results or penalize you in any way for not divulging this info.
17. How much do I need to tell my dentist and other health care workers offering me nonsurgical treatment?
All health care professionals use “universal precautions” to prevent the transmission of blood-borne diseases like HIV and hep C to and from patients, according to Robert J. Frascino, MD, of the Robert James Frascino AIDS Foundation. An expert for TheBody.com, Frascino says he’d recommend disclosing your status to your dentist, though, so that he or she could be on the lookout for HIV-specific problems in the mouth. “Health care professionals, including dentists, are trained to look for certain conditions more closely if they know you have an underlying medical problem, be that diabetes, cancer, HIV or whatever,” he writes. “Why would you not advise your dentist of your HIV status? If you feel that dentist would discriminate against you for being HIV-positive, that’s not the office you want to be treated in anyway, right? Being HIV-positive is not something to be ashamed of. It’s a viral illness.” The same is true for other health care providers: You don’t have to tell them, but it’s in your best interest and best health to do so.
18. What will change for me in my everyday life now that I’m positive?
With proper treatment, being HIV-positive is a manageable, chronic condition like lupus, diabetes, or asthma. But it’s a chronic condition nonetheless. Unless you had other health conditions prior to diagnosis, you’ll likely see a physician more than you did before because it’s vital that you monitor your health closely. Regular visits with your HIV health care provider will keep you up to date on everything concerning your health. Speak with your doctor about changes that need to be made to your diet, exercise regimen, and use of alcohol, prescription medicines, and recreational drugs. If drugs were a factor in your transmission (there’s a link between crystal meth use and HIV transmission, for example), your doctor might recommend rehab. You may tire more easily, be more prone to infections, have medical side effects you didn’t have before. But hands down, the biggest change in your daily routine will be taking medication, if you and your doctor decide this is the best treatment option for you. HIV medication requires strict adherence to the prescribed daily dosage, and the drugs often have side effects. Open communication with your doctor will ensure that you are fully equipped to handle the changes in your life.
19. Will being HIV-positive affect my ability to have gender confirmation surgery, plastic surgery, or gastric bypass surgery? What about hormone treatments?
Short answer: No. There was thought to be heightened risk from surgery, but a study published in 2006 in The Journal of the American Medical Association compared surgery data for both HIV-positive and HIV-negative patients and found that the two groups had the same level of complications from surgery. Moreover, medical workers are better educated about HIV than they once were, and the fear of positive patients has eroded. But you may still have to work harder to find a surgeon who has worked with HIV-positive patients, or if you’re transgender, a doctor who can work with both your HIV specialist and your reassignment surgeon.
20. Do I need a special doctor for my HIV-related issues?
Yes. It is important to find a health care provider who specializes in HIV medical service right away. Sometimes your HIV testing center will recommend someone, or you can also ask your primary health care provider. Finding an HIV specialist who fits your needs is a huge first step after being diagnosed as positive. That person will literally be your lifesaver.
21. In between doctor visits, are there symptoms I should be on the lookout for?
Regular appointments with your HIV specialist are absolutely necessary. It is also necessary that you monitor your body on your own. There are certain signs and symptoms to look out for and a few health factors that should be constantly monitored. According to Rose Farnan, RN, and Maithe Enriquez, RN, authors of What Nurses Know…HIV/AIDS, you should pay special attention to certain symptoms: diarrhea, weight loss or loss of appetite, trouble or pain when swallowing, white patches or sores in or around your mouth, long-lasting fever, a new cough, shortness of breath, headaches, dizziness, blurred vision, or difficulty remembering things. It can be hard to distinguish whether these symptoms are just passing or a more serious issue, but keeping track of your body’s patterns will greatly benefit your health. Farnan and Enriquez suggest keeping written records of weight and other factors that can change over time. Also, do know that medications affect each person differently. While side effects are rarely severe, if you have any side effect longer than a few weeks, don’t just assume you have to just put up with it; ask your doctor about it.
22. How do I prevent myself from getting sick?
Because your immune system’s strength will fluctuate, it is even more important to always keep clean. It sounds basic, but it’s a big help if you simply wash your hands and encourage others around you to do the same, especially before and after you eat, after using the toilet, and if someone around you is sick. Maintain healthy eating habits (there are HIV specialist nutritionists, and your doctor can refer you to them if needed) and start or keep up a regular exercise routine as well (even if it’s just walking 30 minutes a day). Smoking, drinking, and recreational drug use all compromise your immune system, so find ways to cut back on (or ideally, stop) these activities. Don’t forget to keep tabs on your emotions, because mental health is as crucial as physical health. HIV is a chronic condition that comes with a lot of baggage because of cultural stigma. You’ll feel it, and it’ll take a while to get used to it. An HIV-friendly therapist can help you build resiliency at this difficult time. You’ll need a strong support system that can include your doctor, friends, and family, plus new friends you meet in your support groups along the way. But do not hesitate to reach out, because a positive outlook will be one of your greatest allies.
23. If for some reason I’m bleeding, do I need to worry about people who are helping me?
This probably depends on the situation, but often the answer is no. HIV is rarely transmitted in a household between family members (outside of sex and IV drug use, of course). And, if, for example, you got hurt playing football or duking it out at the gym, it’s “highly unlikely that HIV transmission could occur in this manner,” according to the University of Rochester Medical Center. “The external contact with blood that might occur in a sports injury is very different from direct entry of blood into the bloodstream which occurs from sharing needles or works.” The same goes for blood on a Band-Aid or a nosebleed or a cut finger, says Lisa B. Hightow-Weidman, MD, MPH, an associate professor of medicine in the Department of Infectious Diseases, University of North Carolina-Chapel Hill, and an expert for TheBody.com. “There is no risk of getting HIV from blood that has been sitting outside of a human body. Even if the [person bleeding] was infected, HIV begins to die once it leaves the body and becomes unable to infect anyone else.”
One caveat: If you’ve been in a serious auto or other accident, the emergency medical techs who are helping you should be using universal precautions, but it’s always good for your own health to tell them you’re HIV-positive (it’s illegal for health workers to refuse you care based on your status, per the federal Americans With Disabilities Act).
24. Do I have to tell my boss I have HIV, and can I be fired if my boss finds out I have HIV?
You absolutely do not need to tell your boss you have HIV. And you can’t legally be fired unless you have limitations on what you can do and your employer has made every effort to accommodate them. The Americans With Disabilities Act requires employers to make “reasonable accommodation” to the known physical or mental limitations of employees with disabilities (including HIV infection/illness). That doesn’t mean all employers understand the ADA; violations happen all the time, but if you do get fired, you have legal recourse. And certainly, if you have no symptoms that require you to have accommodations, then you can’t be let go because of your status. And under federal nondiscrimination laws your boss or prospective employer cannot require you to take an HIV test either.
25. How do I find support centers or support groups near me?
Each state has its own toll-free HIV and AIDS hotline, and Project Inform has the full list at ProjectInform.org/hotlines. If you call Project Inform’s HIV Health InfoLine, which is (800) 822-7422, you can talk to nonjudgmental people (in English and Spanish) who will listen to you, share their experiences, offer you accurate information about HIV, and help you navigate health care obstacles and talk to doctors about your concerns.
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