We created this guide for gay males that have recently been diagnosed with the HIV virus, or those who are now ready to confront their diagnosis head-on. It is a guide, but not a map, which means that you must create your own rules and methods for fighting this illness. No one can tell you the always perfect, or right way to live your life.

There will be many times that you will have some hard choices to make, and only you will know what the best decision to make will be. Yes, doctors will be there to assist you, but even they are not perfect and this virus has left them just as lost as non-medical professionals sometimes.

Education and getting to know your body is what will keep you alive!

Read this guide thoroughly and do your very best to keep your health as strong as humanly possible for as long as possible. But most of all, remember that living with HIV has changed so much within the last four decades, and will change for the better even more thoughout your life. Try to stay positive and make great choices for your future self.

HIV is the sexually transmitted illness that has shaped gay male culture for decades. From the mass wave of deaths during the early AIDS plague, to a reality of our sex always being wrapped in latex, and now the new world of PrEP and Uequalsu; nothing has defined our personal and sexual lives as much as this single illness.

On the one hand, you have those of the older generation, either HIV positive or negative, that have strong opinions about the virus. And on the other, a younger and more optimistic group of guys that don’t see HIV as a death sentence, and many who proudly announce their status on their bodies and social media.

No matter where you fall within the concept and beliefs about HIV, the fact is, this is our disease to deal with. It has taken the lives of more gay males in the Western World, than any other group. You most likely know others guys living with HIV, if they have shared their status with you or not. HIV is all around us and will be for the foreseeable future.

Even with this being said, testing positive, no matter at what point in history, your age, or race, is jarring…to say the least. We know from experience as the two of us writing this article are long-term survivors; diagnosed in 1990 and 1994, before the days of protease inhibitors. We have some advice and information to share that we believe could be beneficial in your new reality. Some you will be able to use immediately, and others will take you time to realize its value.

  • Take what you need, and leave the rest behind because not everything is for everybody at the same time.

Firsts things first.

Living with HIV is about just that, LIVING. It is not about dying or planning for death. It is not about staying depressed, refusing to leave the house, or even denying yourself the pleasure of a healthy sex life. You need to plan to live a very long life span, because with new medications and treatments, you most likely will.

  • Find a GREAT TEAM of Doctors

We have an article where we go down the list of things to consider when finding a new doctor to assist you with your HIV care. We discuss the issues behind building a team that should consist of a pharmacist, dentist and even therapist. It truly takes a village to keep a gay HIV positive man healthy.

  • Seek Therapy

We are huge supporters of gay male mental health, and would advise anyone with a large change in their life to seek-out assistance in making sure they are adapting and adjusting well. But, in the case of HIV, we believe it is even more important to do so. Not every day or maybe even every week, but at least three (3) times within the first six (6) months, just to make sure you are mentally and emotionally handling things well. After that, the choice to continue, or not, is a personal one.

  • Find a friend you can trust

No matter who you have in your life right now, they may or may not be equipped to help you through the first year of living with HIV. They can be great general friends, but this illness can change the way they see you, and even themselves. You need at least one good friend that will allow you to express all of your fears, concerns, joys and triumphs with this illness. Someone who will not judge you for getting infected or for having rough days as a positive gay man.

  • Cry

OK, maybe you don’t have to actually shed tears, but the release of emotions during this time is very important. You could find yourself swinging from extremes based on a simple T.V. commercial (and don’t get us started on those old AIDS movies with Tom Hanks and others dying horrible deaths). This is all very normal, but you need to make sure to have positive outlets. This might include yelling at the moon, crying or even very long work-outs in the gym. Whatever gets you through the day, hour, minute, or moment.

  • Disclosure to current/former sex partners

The government and almost every HIV org in the United States believes that telling former sex partners about your new status should be first on your list. But, they have never been in the position you are now. Maybe you know who infected you, maybe you don’t, but what you can never know in advance is how they will react when you tell them.

Some guys already had an idea that they might be infected and your outreach could confirm their suspicions, thus sparking them into testing and treatment. And then there are those guys that will BLAME YOU for infecting THEM and then telling the world through social media. Finally, we all know that many of you have no real clue about who infected you, or even when. So, making that call to the wrong guy(s) will not end well.

We are not saying that you shouldn’t tell former sexual partners, but we are saying use your best judgment. Every sexually active gay male should be getting tested every three (3) months for STIs, and it is not your responsibility to stop dealing with your own shit to baby sit some guy you met once on Grindr while he was high on meth and only know as ChArlieBIGDICK69. (we’re just guessing about this last bit. NO JUDGMENTS)

Next Steps.

  • Decisions, decisions, decisions

After an HIV positive diagnosis, you might have the feeling that you need to change things about your life. Maybe sexual stigma is rearing its ugly head, or you have some regrets about things from your past that might have caused your infection. The first thing to keep in mind, is that the past is the past…leave it there. You cannot change what was done by making rash and hurried changes. Take a moment to breath. DON’T JUST DO SOMETHING, SIT THERE.

  • Don’t

Please, no matter how much you have the urge too, don’t make rash decisions that can possibly make things worse. This includes quitting your job, breaking up with your boyfriend, moving across the country to a vegans only commune, and of course, telling everyone who follows you on social media about your status. You will have many years to decide if you want to follow through on these ideas, just don’t do them in the first year of diagnosis.

  • Do

Do, think about some things that might make your life better and easier, this includes working less (if you are a workaholic), spending more or less time with family (depending on your relationship with them) and of course, your relationship with drugs and alcohol. We strongly advise you to quit smoking cigarettes as it is a major health hazard for positive guys.

  • Consider

Take some time to think about your relationship with sex and your number of partners. Only you know for sure if some changes will need to be made. If you are comfortable with your actions, carry on, but if your Friday’s turned into Monday’s of drug and sex-fueled orgies, this might be the time to make a few changes.

We don’t want you to begin sex shaming yourself or spending needless hours trying to figure out who infected you, or why this had to happen to you. None of these things will help your physical or mental health in the short or long run. But you should consider how you would like to move forward with your sexual and dating life. One day, your itch will want to be scratched and your heart will get lonely.

  • Definitely

Go out and get yourself a book/journal or whatever you feel most comfortable with, to write medical issues, concerns, complications and topics to discuss with your doctor. This will help make conversations about your healthcare easier with your provider, as dates and descriptions will move the process along faster. But, in the long run, it helps when you have similar symptoms to something that you had in the past. Now, you won’t have to scratch your head in wonder, you can just check your medical binder. Finally, this will help if you are ever hospitalized and they need a full account of your medications, allergies and history. This is a very good thing to have.

Big Steps.

If you live in Europe, you won’t have an issue with health insurance or getting your medications paid for. But, if you live in the United States, things will be a lot more complex.

  • If you are employed

Due to the Affordable Care Act, or so-called Obamacare, you cannot be denied coverage or continued coverage due to your illness. But this is being challenged in many courts around the nation and you will need to keep yourself informed of the outcomes.

Many people ask if they should inform their employer, or Human Resources Manager, about their HIV infection. By law, there is no reason for you to do this. But, be careful, if you choose to disclose, you might get backlash in the form of discrimination and even termination. Yes, these moves would be in violation of the Americans with Disabilities Act, but that doesn’t mean companies don’t violate this law everyday. During your first year of living with this virus, the last thing you need is to lose your job and end up on a court case. Think before you speak.

NOTE: The act of disclosing your HIV status to your employer or even your landlord could confirm your homosexuality, which is NOT PROTECTED under Civil Rights Statutes in most of the United States. So, you could be fired from your job, not because of HIV, but because you are gay. After this, you would have no legal recourse to challenge their decision.

  • If you are without health coverage

Most younger gay males in the United States are without any sort of health insurance coverage, even if they are employed. Many are working part-time jobs that don’t offer health benefits, are students or unemployed. Ironically, if this is your situation, life just got easier.

  1. If you are without income or have very little, individual state MEDICAID programs will assist you in gaining the health coverage you need.
  2. The AIDS DRUGS ASSISTANCE PROGRAM (ADAP) is available if you are working but have an average income that does not exceed 500% Federal Poverty Level based on household size and income. They provide coverage for all of your medications as well as doctors visits and co-pays.
  3. If you live in the great state of New York, and have financial and or housing issues, contact the HIV/AIDS Services Administration (HASA). This is a complete program for healthcare, finances, and housing.

HIV Health.

By now, you should know all about Uequalsu and the benefits of being undetectable. The lower the amount of detectable virus within your system, the healthier you are and less likely to infect your sexual partners, with or without a condom. But getting to this stage is easier for some than others. It might take some medication and life style changes to get and remain there.

The facts and science around Uequalsu should bring you some form of comfort when it comes to your dating and sexual life. As long as you are on effective treatment and undetectable, you cannot infect your sexual partners, even without a condom. Past generations lived in constant fear of giving their lovers a death sentence. This will not be a concern of yours. Feel safe in this knowledge and let it be one less thing that weighs you down.

  • Medications

Luckily, we live in a time where the number of choices for treatment are large and varied. We not only have medications but options that fit our life styles. Some need to be taken with meals and some without. Some are a single dose pill a day, and others are multiples pills, but still once daily. Your doctor will help you decide which one(s) is right for you, and it is not rare to be changed if the first set is not working or if a better medication, with less or lower side-effects presents itself on the market.

Here is a list of the most commonly prescribed medication for HIV treatment as well as a guide on starting ART.

Note: New HIV medications are constantly coming out, and old ones are “retired”, so check with your doctor for the most up-to-date lists.

AND ALWAYS DISCUSS SIDE EFFECTS WITH YOUR PROVIDER!

  • Side Effects

One of the largest concerns guys share with us, is regarding medication side effects. Every single medication on the market has some type of side-effects, including over the counter aspirin. Most of the newer medications are without the huge physical, mental and emotional changes that common in the bad ole days. Gone is the facial wasting syndrome as well as muscle loss and fat redistribution. But tummy troubles are still the most common side effect reported. This is easily treated with over the counter medications, cutting back on dairy products and reducing stress.

Here is a list of the most common medication side effects, which might cause them and some solutions for managing them.

Appetite loss

Examples of drugs that may cause it:

  • abacavir (Ziagen)
  • zidovudine

What might Help:

  • Eat several small meals per day instead of three large ones.
  • Drink smoothies or take nutritional supplements to make sure the body is getting enough vitamins and minerals.
  • Ask a healthcare provider about taking an appetite stimulant.

Lipodystrophy

Lipodystrophy is a condition that causes people to lose or gain fat in certain body areas. This may make some people feel self-conscious or anxious.

Examples of drugs that may cause it: 

Combinations of drugs from the nucleoside/nucleotide reverse transcriptase inhibitor (NRTI) and protease inhibitor classes.

NRTIs include:

Protease inhibitors include:

  • atazanavir
  • darunavir
  • fosamprenavir
  • indinavir
  • lopinavir
  • nelfinavir
  • ritonavir
  • saquinavir
  • tipranavir

What might help:

  • Exercise can help reduce body fat from the whole body, including the areas where fat has built up.
  • An injectable drug called tesamorelin (Egrifta) may help reduce excess belly fat in people who take HIV drugs. However, when people stop taking tesamorelin, belly fat is likely to come back.
  • Liposuction can remove fat in areas where it has collected.
  • If weight loss occurs in the face, a healthcare provider can provide information about injections of polylactic acid (New Fill, Sculptra).
  • People with diabetes and HIV could consider asking their healthcare provider about taking metformin. This diabetes drug can help reduce abdominal fat caused by lipodystrophy.

Diarrhea

Examples of drugs that may cause it:

What might help:

  • Eat fewer greasy, fatty, spicy, and dairy foods, including fried foods and products that contain milk.
  • Eat fewer foods that are high in insoluble fiber, such as raw vegetables, whole grain cereals, and nuts.
  • Ask a healthcare provider about the benefits of taking over-the-counter anti-diarrheal medications, such as loperamide (Imodium).

Fatigue

Fatigue is a side effect of HIV drug treatment, but it’s also a symptom of HIV.

Examples of drugs that may cause it:

  • zidovudine
  • efavirenz

What might help:

  • Eat nutritious foods to increase energy.
  • Exercise as often as possible.
  • Avoid smoking and drinking alcohol.
  • Stick to a set sleep schedule and avoid taking naps.

Higher than normal levels of cholesterol and triglycerides

Examples of drugs that may cause it:

  • All HIV medications are known as possible causes.

What might help:

  • Avoid smoking.
  • Get more exercise.
  • Reduce the amount of fat in the diet. Talk with a nutritionist about the safest way to do this.
  • Eat fish and other foods that are high in omega-3 fatty acids. These include walnuts, flaxseeds, and canola oil.
  • Have blood tests to check cholesterol and triglyceride levels as often as a healthcare provider suggests.
  • Take statins or other medications that lower cholesterol if prescribed by a healthcare provider.

Mood changes, depression, and anxiety

Mood changes, including depression and anxiety, can be a side effect of HIV drug treatment. But mood changes can also be a symptom of HIV.

Examples of drugs that may cause it:

  • efavirenz (Sustiva)
  • rilpivirine (Edurant, Odefsey, Complera)
  • dolutegravir

What might help:

Nausea and vomiting

Examples of drugs that may cause it: 

Almost all HIV drugs.

What might help:

  • Eat smaller portions throughout the day instead of three big meals.
  • Eat bland foods, such as plain rice and crackers.
  • Avoid fatty, spicy foods.
  • Eat meals cold instead of hot.
  • Ask a healthcare provider about antiemetic medications to control nausea.

Rash

Rash is a side effect of almost every HIV medication. But a severe rash can also be a sign of an allergic reaction or another serious condition. Call 911 or go to the emergency room if you have a rash along with any of the following:

  • trouble breathing or swallowing
  • fever
  • blisters, especially around the mouth, nose, and eye
  • a rash that starts quickly and spreads

Examples of drugs that may cause rash:

  • protease inhibitors
  • emtricitabine
  • raltegravir
  • elvitegravir/tenofovir disoproxil/emtricitabine
  • non-nucleoside reverse transcriptase inhibitors (NNRTIs), including:
    • etravirine
    • rilpivirine
    • delavirdine
    • efavirenz
    • nevirapine

What might help:

  • Moisturize the skin with lotion each day.
  • Use cool or lukewarm water rather than hot water in showers and baths.
  • Use mild, non-irritating soaps and laundry detergents.
  • Wear fabrics that breathe, such as cotton.
  • Ask a healthcare provider about taking an antihistamine medication.

Trouble sleeping

Examples of drugs that may cause it:

  • efavirenz
  • emtricitabine
  • rilpivirine
  • indinavir
  • elvitegravir/cobicistat
  • dolutegravir

What might help:

  • Exercise regularly.
  • Stick to a set sleep schedule and avoid taking naps.
  • Make sure the bedroom is comfortable for sleep.
  • Relax before bedtime with a warm bath or other calming activity.
  • Avoid caffeine and other stimulants within a few hours of bedtime.
  • Talk with a healthcare provider about sleep medications if the problem continues.

Other side effects

Other side effects from antiretroviral drugs can include:

Remember to consult your healthcare provider before trying any of these suggestions. The healthcare provider will determine if it’s a safe option.

  • Adherence

Simple fact: medication cannot and will not work, if you don’t take them. You must also do this as prescribed by your provide. We have an article with tips on how to “Take meds Like a Pro” but the basics are:

TIPS ON TAKING MEDICATIONS:

  1. Get into a rhythm and take them at the same time everyday.
  2. Most medications taste horrible. Swallowing is much easier with juice, milk or even soft drinks (if necessary).
  3. Try not to think about why you are taking them. Remembering that you have HIV every time you take meds will only depress you or cause internalized stigma or even shame/blame.
  4. Get some privacy. If you don’t live alone, there is no need for the entire home to witness your routine.
  5. Be slick about it. If it is one pill or three, cup them in your hand, take a sip of something, pop them in your mouth quickly, and then swallow. No one even has to know.
  6. If necessary, get a daily pill box reminder. You know, like the one your grandfather has. This will make sure you don’t skip doses.
  7. For the truly challenged, set your mobile phone to remind you with an alarm.
  8. Worse comes to worse, get a friend or family member to help you remember. This is your life and health we are talking about, so this is not the time to get embarrassed if you need help.
  9. Never take medications with alcohol. Many times the mixture can create horrible side effects, and one might increase the effectiveness of the other.
  10. Finally, if none of the above work or you are having problems being consistent, try making a game out of it, and giving yourself rewards for small achievements like one (1) full week without missing a dose, and larger goals like T-cell count improvements, until you finally reach and sustain undetectable.

Let’s be clear about a few things. An HIV diagnosis is nothing to take lightly and neither is the need for you, the patient, to take your medications as directed. This is an illness that we can control and keep from passing on to others, but this can only be done if each and everyone of us is properly tested for HIV and if positive, take the treatment as directed. Because Treatment is Prevention!

S.E.X.

Well, here we are, back where it all began.

In the early 1980’s cities around the United States began to shut down any and every public space that had a gay male sexual clientele, ostensibly to stop the spread of HIV. But all it really did was chase our sex underground and make our community feel shitty about physical contact with one another. Those who tested HIV positive bore the brunt of the world’s collective wrath.

Back in those days, it was considered morally wrong for a person living with HIV to even consider having a sexual life. Even talking about it was considered taboo, but luckily those days are gone (for some but not all of us).

Navigating the dating and sexual world as a newly positive gay man can be difficult, especially depending on where you live. Large cities like New York and San Francisco have vibrant populations of guys who are open about their status and are even throwing positives only sex parties. If you are not lucky enough to be in a large city, you still have the option of on-line dating sites like POZ Personals, which caters to those living with HIV ONLY.

Of course you always have the more standard options of gay hook-up apps that now feature questions about one’s HIV status and include the option of “undetectable”. We will not lie to you, there is still too much stigma within our community about HIV and against our brothers, but it is not as bad as it used to be and we have many negative guys who are looking out for us, and dating us, thanks to PrEP and the knowledge about UequalsU. In your dating and sexual life, you might need to educate your future partners about these topics, but it will be worth it in the long run.

  • Disclosure

One of the biggest and most heart wrenching decisions you will need to continually make in your life as a gay man living with HIV, is who to tell and when. When it comes to sex and dating this can be a hard choice because the blow-back can be bad no matter what we do.

  1. If you disclose immediately, you risk stigma, rude and nasty comments as well as your personal information being shared all over the internet.
  2. If you don’t disclose fast enough (for his standards) you will be called a liar, time waster, AIDS carrier and other very bad things.

We cannot tell you when to disclose, because we are still figuring that out for ourselves. But we believe in the dating world, that on the second or third date is a safe bet. It is long enough to decide if you would like to get to know him better, but not so late that he feels deceived or led on.

In our article about STDs and Hooking up, we outline some tips and options available to you, depending on how you meet guys. This will vary from on-line sites to sex parties and even bathhouses. But, ultimately the decisions, as well as the consequences are yours.

Our final tip about sex and disclosure is this: no matter what others think about you, you still deserve love and affection as well as sex. You are not a monk because you are living with HIV. You also are not dead yet, so don’t let others force their narrow minded and outdated beliefs on you. It might take you a while to get comfortable doing it again, but get back out there and have some amazing sex!

  • HIV criminalization Laws

Depending on where you live, you might not have a choice about disclosing your HIV status to your future sexual partners. HIV criminalization laws have been in effect within the United States since the late 1980’s and new laws are still being written to this day.

Of course, we have addressed this issue, and give you all the information you need to know, in our article on the subject, but it is important that you take these words seriously because the alternative could mean prison time.

Final Step.

Once you make it past the first few years living with this virus, you will begin to get a handle on your new status. Over time it does get easier, if not better. Yes, some days are hard, and some others are fucking horrible, but this is called life.

An HIV diagnosis doesn’t make you a bad or unclean person, just like being negative doesn’t mean a guy is a good person or “clean”. This is an illness, not a morality test that you failed. Remembering this is key to getting on with your life.

When HIV was first discovered, we never thought there would be a cure. Then, when we were taking handfuls of pills three (3) times a day, we couldn’t imagine a one-dose regiment. Now, new trials are being done on once a month injections, so who knows what the future will bring by way of treatments.

RESOURCES:

New York City/State HIV/AIDS Services Administration (HASA)

MEDICAID and HIV

NYC HIV Law Project

In the old days, we had a saying: “You need to live long enough until a new and better mediation comes along“. Now, we say: “you need to live, and be happy”!

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