Being diagnosed with HIV is a shock. It can resurface a lot of issues around sex, sexuality, and our well-being that we might have thought we dealt with long ago. This guide is aimed at someone who is newly diagnosed -- and it was written by someone who has been down that road himself, having been diagnosed with HIV in 2018. It provides some advice that may help in getting through that initial, difficult period with less trauma and less stress.
The good news is on the other side of that initial post-diagnosis period. There are millions of people with HIV worldwide who are living happy and fulfilling lives. For them, and soon enough for you, HIV becomes part of the background, no more or less important than they want to make it in their lives, and contributing something powerful to our sense of community and belonging.
Below are some first steps, offered in the hope of speeding you from the challenges of today to a calmer and more joyful future.
Our Pro PanelLiving With HIV: First Steps
We're grateful to the following experts for sharing their time, knowledge, and wisdom in the creation of this article.
Grey Perry, LMSWMental Health Services Coordinator
Bill GrossSAGEPositive Program Manager
Mental Health Steps After Being Diagnosed With HIV
HIV is a medical diagnosis, but it's also much more than a medical diagnosis. Now that HIV treatment works so well, the biggest struggle for someone newly diagnosed in the U.S. is more likely to be around mental health. That is why this topic is addressed first. You must address the medical side immediately (see next section), but at the same time prioritize some concrete steps to address the emotional side:
Talk to other people with HIV.
Fight the inner critic.
Stay sex positive.
Mental Health Step #1: Breathe
I AM OK! I WILL BE OK!
Come back to that concept, again and again. Why? Because it is true. Would you have wished for the current situation? No. Is it easy? No. Is it reasonable to be in turmoil? Yes.
BUT: Is your medical prognosis good? Absolutely! Will you get through this and be fine? YES!
Take things one step at a time, one day at a time, one hour at a time. Breathe. There is no need to deal with everything at once. But take some small steps. Congratulate yourself for those steps.
The one thing that is non-negotiable is getting on treatment. For the rest, you can take these steps gradually. This is a big change, and you will take some time to integrate it into your self-image in a positive way. Don't be in a rush, but encourage and celebrate small advances in your thinking about HIV.
Mental Health Step #2: Tell Someone
… But probably not everyone, just yet. An HIV diagnosis is a lot to deal with by yourself. It can be really important to tell one or a very small number of trusted family or friends. They can take some of the pressure off, bring you back to reality, and nudge you away from catastrophic thinking.
But choose those people carefully. Will you end up having to educate them, more than getting support from them? Will they try to "fix" you, or will they be sympathetic listeners? Tell those who will actually help.
It's common to feel that you have to tell everyone immediately. You really don't. Right now, you should be a little bit selfish. Tell the people who will help you. Delay telling the people who will further complicate your life. It's somewhat urgent to tell someone, but it's definitely not urgent to tell everyone. Do it as you feel comfortable and confident.
That confidence is also important. Telling someone, "I got infected with HIV" raises alarms. Telling someone, "I'm living with HIV" gives an immediate sense that you are already confronting and dealing with the situation, but would like them to be aware of it. It can set the stage for a more supportive conversation.
Mental Health Step #3: Talk to Other People With HIV
Support groups can be extremely powerful, and in surprising ways. As someone who is newly diagnosed, seeing a group of people who are confidently and happily living with HIV can be one of the best ways to advance your own thinking. Initially, you may be receiving advice more than giving it, but soon enough you will be adding tips of your own. That kind of mutual support makes everyone feel better.
Finally, there is a great comfort in half expressing an idea, and knowing that the people around you immediately get the point, since they have experienced very similar emotions and thoughts.
Check out a local HIV support organization or a site like Meetup to look for HIV support groups. If support groups are not readily available in your area, searching out articles and online testimonials on reputable HIV websites can also make you feel more part of a community of strong and positive (in both senses of the word) people.
Mental Health Step #4: Consider Therapy
Therapists can help you get out of your own personal mental gymnastics and see that the world is not actually ending. At least for me, some short-term therapy was incredibly helpful both in coping with the immediate trauma of the diagnosis, and in pushing beyond my initial catastrophic thinking into a more rational and positive outlook.
You'll need a therapist who is sympathetic to your sexuality and your HIV status. You can search for therapists on a site like Psychology Today -- put in your zip code, then filter the results by whatever factors matter most to you, like whether they're gay or if they work with your insurance provider. Many insurance policies have quite poor coverage for therapy -- often with a high deductible or low payments that therapists don't accept. However, there are free or discounted options through local HIV support organizations; ask around.
Mental Health Step #5: Sleep
If the worry that comes with an HIV diagnosis is preventing you from getting enough sleep, just roll with it. Give an honest effort to getting to sleep, but if it fails, get up and do something.
Remember that when you are sleep-deprived, the thoughts you have are likely not very rational and are probably greatly over-dramatized. No, it's not true that you will "never sleep properly again." If it's 3 a.m. and you are still awake, remember that soon it will be daytime, you will muddle through the day, and tomorrow night you will be tired enough to get a much better sleep.
As your sleep improves, your worries will decrease, and as your worries decrease, your sleep will improve. You will get there. Just ride it out.
Mental Health Step #6: Meditate
Meditation is not for everyone, but it's really worth a try. There are plenty of apps to try (Headspace is my favorite). The common perception is that meditation is about emptying your mind, which is too hard, especially when your mind is buzzing with disturbing health news. But mindfulness meditation is simply about observing and calmly noting whatever your mind is doing. Having seen more clearly that chaos in your head, you have a better chance of pushing back on any unproductive or upsetting ideas, and seeing how to frame your situation into a more constructive and supportive inner dialogue.
Mental Health Step #7: Fight the Inner Critic
Whether you meditate or not, that idea of awareness -- of monitoring and (if necessary) modifying your thoughts -- is essential.
At some point, you'll probably be in self-blame mode. Everyone does it -- some of us (yes, me) do it a lot -- and guess what: It's really quite pointless. Obsessing about the past gets you nowhere. Observe that you're doing it, note it, dismiss it, and move on to something else.
The human condition involves making mistakes. I've made them. You've made them. So does everyone, in some form or another. So, all we can conclude is: I'm human and you're human. If one or more of those mistakes led to you living with HIV, can you fix those mistakes and reverse all their consequences? No. Can you get on with your life despite those mistakes, but now as a better person who is more aware of the world? Yes and yes. Focus on moving forward.
Mental Health Step #8: Stay Sex Positive
If you got HIV through sex, then the inner critic will probably spin some old sex-negative (and gay-negative) thinking into those dark thoughts I described above. Once again, push back on this.
Sex is a critical part of life. You deserve to have it, and you should have it. And, once you have an undetectable viral load (see below), the fear of infecting others should -- and will -- melt away. Be safe, stay free of other diseases, but embrace sex.
Mental Health Step #9: Exercise
Exercise is one of the best mood modulators around. Endorphins are real. They make you happy, the natural way. Find exercise that you actually like, whether that's cycling (yay) or running (ugh) or the gym (ugh) or hiking (yay), and watch those emotional demons retreat.
Medical Steps After Being Diagnosed With HIV
There are six key steps you should take to ensure your body remains healthy -- or, if you're currently ill, returns to health -- while you're living with HIV:
Get on treatment.
Stay on your meds.
Find a health care provider you can trust.
Get your regular checkups.
Medical Step #1: Get on HIV Treatment
If you are not on HIV treatment already, do it as soon as you possibly can. If you don't know where to start, some state or city sexual health clinics in the U.S. offer not only HIV testing but also free initiation of HIV drugs, along with linkage to an HIV provider for ongoing care.
In the 1990s and early 2000s, antiretroviral medications to treat HIV were almost as good at producing disturbing and dangerous side effects as they were at keeping people healthy. All that is in the past. The newer regimens have minimal to no side effects, dangerous reactions are very rare, and the drugs shut down the virus in your body faster and more thoroughly than ever.
All the debate about when to start HIV treatment has disappeared, and now every reputable health organization (e.g., the U.S. Department of Health and Human Services and the World Health Organization) recommends -- in fact, they insist -- on immediate initiation of treatment. "Test and treat" is the new mantra.
Why get on HIV medications? For starters, you'll feel better physically, especially if you were diagnosed after HIV had already damaged your immune system. Within weeks (or a few months at most), any opportunistic infections -- and the mysterious fatigue that you ignored for months (yes, I'm talking about me again) -- will most likely disappear.
Second, you'll get peace of mind. Yes, you have HIV, but you are dealing with it -- and taking the first and most important step in regaining a normal life.
Third, the new antiretroviral regimens reduce viral load to undetectable very quickly (often within two to three months), which will make you much less worried, not only about your medical prognosis, but also about having sex. (More on that in a moment.)
Medical Step #2: Stay on Your Meds
As people living with HIV, there is just one thing that we really have to get right when it comes to maintaining our physical health: Take our HIV drugs every day. That simple action will keep us healthy and prevent complications like developing a drug-resistant strain of the virus.
Taking your pill(s) is a repetitive action. Some days you will forget: Did you do it already, or are you just remembering taking the same pills in the same exact place yesterday? That's why, for me, a one-week pill box (with one pill compartment per day of the week) is critical. Fill it once a week, and you'll never doubt again whether or not you've taken today's dose. If a pill box isn't your thing, you may find other methods to be a better fit: Some people use apps, calendar notifications, or reminder services (which can send texts, emails, or automated phone messages), for example.
As a bonus, taking your HIV drugs every day will allow most people to fully suppress their virus, so that their HIV is undetectable. As the saying goes, "undetectable equals untransmittable," or U=U. This means that, once your drugs have killed off enough virus so that viral load testing can't detect HIV in your blood anymore ("undetectable"), then that means you can't transmit HIV to anyone during sex ("untransmittable"), regardless of whether you use a condom or another form of HIV prevention. (The caveat: Condoms are still a crucial protection from other sexually transmitted infections, including some nasty drug-resistant bugs.)
And truly, when it comes to U=U, experts do mean untransmittable. A pair of landmark studies called PARTNER and PARTNER2 recruited thousands of gay and straight couples to see if an HIV-positive partner (with their virus suppressed by treatment to fewer than 200 copies/mL) ever transmitted HIV to their HIV-negative partner. The result: zero transmission events among such couples. That's despite thousands of acts of penetrative condomless sex -- 36,000 of them among the straight couples and almost 77,000 among the gay couples.
Knowing that you cannot transmit HIV during sex is a big relief. By staying on your meds, you too can proudly join the U=U community, and use that to motivate yourself even more to take your HIV drugs every day.
Medical Step #3: Find a Health Care Provider You Can Trust
HIV treatment options today are greatly improved compared to those available in the 1990s and early 2000s. As a result, HIV care is much less complicated for health care providers, especially when they're caring for patients who have never taken HIV medications before.
Obviously, you still want a good provider who is up to date on the latest HIV treatment information -- and who, ideally, has a number of clients living with HIV. But the personality of that provider is just as important, if not more so. My first doctor was condescending and didn't like me asking questions. I moved straight to the next one, who is great. Find someone who you can relate to, and who encourages rather than discourages questions.
For those with lower incomes, the Ryan White HIV/AIDS Program provides comprehensive HIV care. Tools to locate Ryan White centers are available at HIV.gov and the website of the Health Resources and Services Administration. Your local HIV service organizations can also help you navigate the application process.
Early on, there can be a lot of tests. Depending on your CD4 count (a measure of your body's ability to fight off illness on its own) when you're first diagnosed, your doctor may test for a variety of opportunistic infections. Gradually, this will decrease to just a few tests to monitor your treatment. These are blood tests to make sure that:
Your liver and kidneys are not being damaged by the HIV drugs. (Again, generally the new drugs are very safe, but this testing is just in case.)
Your CD4 count and CD4 percentage are doing OK.
Your viral load is undetectable, or at least moving downward toward undetectable.
Those monitoring tests will gradually decrease in frequency. At first, they may be as often as once a month, but if your numbers become stable, that will likely decrease to once every three, six, or even 12 months. (In fact, for those who have been stable for years, a CD4 test may be dropped entirely, since viral load is a more informative measure of how well your treatment is working).
Once you are stable on treatment -- taking HIV medications consistently, with undetectable virus -- it is very unlikely that you will have a treatment problem. But it is critical to follow your providers' instructions on the frequency of these tests by making sure that you make and keep all requested appointments.
Finally, note that lots of people have "blips" in viral load (occasional viral load levels of 50 to 200, which usually vanish at your next test), especially when they are stressed or suffering from a cold or the flu. Your doctor should request a follow-up viral load test shortly after such a blip to make sure it is nothing more serious, but rest assured that the vast majority of these blips mean essentially nothing medically. As long as you continue regularly taking your medications, you should soon be undetectable again.
For a relatively small number of people, low-level virus of fewer than 200 copies/mL may persist over time, but these individuals generally remain healthy -- and U=U still applies to them, since the landmark studies that established U=U used viral load tests that counted undetectable as any viral load below 200.
Medical Step #5: Educate Yourself
… But don't overwhelm yourself. There's a lot of information available about HIV, and many readable articles about both treatment and lifestyle news for people living with HIV. There is no need to absorb such information all at once, but seeking out a bit at a time can be good, and help you to be more informed about your treatment and more proactive with your health care providers.
The full, scientific basis for your HIV treatment options is available within official U.S. guidelines maintained by the Department of Health and Human Services and kept up to date by a nationwide panel of top health care providers, researchers, and advocates. The HIV treatment guidelines for adults include everything from a basic summary to the full 350-page text in all its exhausting detail.
But if all this seems like too much, then just relax: There really is no need to get this deep into the weeds. That is especially true now that modern medications are so good -- honestly, any of the recommended first-line treatment options that your provider is likely to prescribe will be a thousand times better than what was available 10 years ago, and there is little to tell between them anymore.
If you feel overwhelmed, consider bringing a close friend or partner (i.e., someone who already knows about your diagnosis) to your appointment. That way, you can make sure that at least one of you fully understands the issues and is getting the answers that you need.
Practical Steps After Being Diagnosed With HIV
To ensure your general quality of life after your diagnosis, there are four key issues that can be very helpful to have in order, if you're able:
Fix your health insurance.
Get a pharmacy.
Get a copay card.
Practical Step #1: Fix Your Health Insurance
The health insurance system is still a mess in the U.S., but the Affordable Care Act (ACA) has made things much better. Importantly, pre-existing conditions including HIV can't be used to refuse insurance coverage.
If you have reasonable insurance coverage already, learn how to monitor your insurance reimbursements and payments online, including understanding your deductibles and copays.
If you don't have insurance, or if your coverage is bad, consider researching better insurance plan options via one of the state health marketplace websites. When considering joining a new plan, find out ahead of time whether your preferred plan (a) is accepted by your current doctor; and (b) has your current HIV drugs on their plan's formulary (i.e., their list of covered drugs, which should be online).
Then you should check the deductible and copay policies. First, see if the deductible applies to medical visits only (typical of Silver plans and above), or also to drugs (more typical of Bronze plans). If there is a deductible for drugs, you may pay the entire cost of medication first until that deductible is reached. Only then do you go to copay only (and then you pay the copay until the "out of pocket maximum" is reached).
Practical Step #2: Get a Pharmacy
Many insurance companies will assign your HIV medication prescription to something called a specialty pharmacy. These specialty pharmacies handle prescriptions that are particularly expensive, or manage situations where there is a greater concern about people staying on regular therapy.
In theory, specialty pharmacies are meant to pay more attention to ensuring that you get your drugs regularly and on time. In practice, I found them to be an extra level of bureaucracy that made it more, not less, likely that I would miss out on some of my doses. In addition, they will only deliver via mail order, which can raise issues around confidentiality or (in my building) deliveries being stolen.
Be aware that, for most insurance companies, you have the option of transferring your prescriptions from the specialty pharmacy they recommend to a local neighborhood pharmacy. Maybe that raises more issues around confidentiality for you. But, in my experience, the local pharmacy was extremely professional, and it provided far more personalized and less complicated service than the specialty pharmacy. Pick whichever option is most comfortable for you.
Practical Step #3: Get a Copay Card
Most drug companies that make HIV drugs (e.g., Gilead, ViiV, etc.) have copay coupon cards. I've found that if you Google the medication name and "copay card," you can find details about them easily. (Although it's wise to be careful about assessing the trustworthiness of pages you find through Google search results, I had success with this particular search.) You'll need to sign up online (a simple process), after which you'll give the card number to your pharmacy. Then, instead of paying the copay that your insurance doesn't cover, the drug company itself will pick up the copay charge, and the drugs will likely be free to you.
If you are on pills from two different companies (e.g., you're taking Descovy [emtricitabine/tenofovir alafenamide] and Tivicay [dolutegravir]), you'll need two different copay cards -- one for each company. For any remaining copays, you may find assistance from the Co-Pay Relief Program.
Always carry your HIV drugs in your carry-on luggage, not your check-in luggage, and use the original prescription bottle with your name on it. Bring a letter from the person who prescribed you your meds, stating the name of each medication and noting that you need them for your health (there is no need to mention HIV in the letter). And bring enough pills for some additional days in case of flight delays.
According to the Centers for Disease Control and Prevention, people living with HIV should take standard precautions for travel (i.e., the same vaccines and other preparations that HIV-negative people would take) as long as you do not have "severe immunosuppression." The definition of severe immunosuppression is having a CD4 percentage below 15%. So if your percentage is higher than that, just follow the regular travel medicine advice.
The fear around HIV is based primarily on old news -- the bad old days of the epidemic in the U.S., when treatment options were few, there were more questions than answers, and hope was in short supply.
With modern treatment options being so good and attitudes changing, living with HIV does not have to be a major issue in your life. It may not feel that way now, but gradually, you will get there.
In the meantime, be kind to yourself, and allow yourself the time and forgiveness to get used to this new reality. Reach out to others, so that you can join in the fellowship and humanity of those who can share in this experience. Maybe, just maybe, they will bring you not only comfort, but also greater joy and connection than you ever expected.
Acknowledgments: Many of the ideas in this document came from my therapist at the LGBT Center in New York -- a rock star of a human being. My partner has been as supportive as anyone could ever be, and many other people have been exceptionally kind along the way. Thank you!