Young Men's HealthLiving with HIV: All Guides
Living with HIV: Health Resources for Guys
Posted under Health Guides. Updated 20 March 2018.
Medications: Getting organized is the first step towards making sure you’re adherent to your treatment regimen. It’s important to know about what meds you’re on, how to get them, and how to take them.
Staying On Track: It’s important to stay on track once you’re on a treatment regimen. Communicating with your treatment team and learning how to manage side effects from meds can help you stick with it.
How to Deal: Being able to deal with your feelings makes a big difference when it comes to sticking with your treatment regimen. It’s important to take steps to make sure that your mood doesn’t get in the way of taking your meds.
Social Life: Dealing with friendships and social situations is hard as a teen/young adult, especially when you’re trying to adhere to a treatment regimen.
Disclosure: Disclosing (telling people about) your HIV status is a personal choice. There may be advantages and disadvantages to disclosing your status, and it’s important to think about them.
Adapted from:
Thurston, I. B., Bogart, L.M., Wachman, M., Closson, E. F., Skeer, M. R., & Mimiaga, M. J. Adaptation and Pilot Trial of an HIV Medication Adherence Intervention for Adolescents and Young Adults. Cognitive and Behavioral Practice, Special Issue.
Mimiaga, M.J., Bogart, L.M., Thurston, I.B., Skeer, M.R., Wachman, M., Closson, E.F., & Safren, S.A. (2012). Positive Strategies to Enhance Problem-Solving Skills: Positive STEPS. Therapist & Participant Manuals.
Finocchario-Kessler, S., Catley, D., Thomson, D., Bradley-Ewing, A., Berkley-Patton, J., & Goggin, K. (2012). Patient communication tools to enhance ART adherence counseling in low and high resource settings. Patient Education and Counseling, 89(1), 163-170. doi: 10.1016/j.pec.2012.03.020
Living with HIV: Staying On Track
Posted under Health Guides. Updated 20 March 2018.
Communicating with your health care provider(s)
Talking with your health care provider (HCP) is an important part of staying on track and on top of your meds. However, it can sometimes be hard to remember what questions you want to ask your provider. It may also be hard to remember everything you and your HCP talked about.
Something that might help you make the most of your appointment is writing down a list of things you want to talk about (as shown in the example on the right). You can do this in a notebook, or on a cell phone or tablet.
Dealing with side effects
Many people experience side effects from their HIV meds. It’s completely normal to feel frustrated if you’re having them, but it’s not a good reason to skip a dose without first checking with your provider. If side effects are bothersome, keep track of them using the tracker (provided below). Your HCP can work with you to improve or eliminate the side effects that are bothering you.
- Sample side effect tracker (Check this out first to see how to use it)
- Blank side effect tracker
Self care
Because you have HIV, your immune system (the part of your body that works to fight off infection) might not work as well as it should. You may get sick more often or be sick for a longer amount of time. This is why it’s especially important to take care of yourself.
Check out our health guides to learn more about staying healthy and feeling well:
- Colds and Flu
- College Health
- Complimentary and Alternative Medicine (CAM)
- Immunizations
- Nutrition
- Stress and How to Lower It
How to handle a medication slip up
Ideally, you’ll take all of your meds as prescribed, but if you slip up and miss a dose of medication every once in a while – don’t worry too much. Slip ups only become a big problem if you miss several doses or if you stop taking your meds regularly. Taking your meds infrequently is worrisome, because it can lead to relapse, ie; when you stop taking your meds altogether.
When people haven’t been taking their meds regularly, making the decision to improve how often they take their meds may be intimidating. It’s important to remember that you’re still making progress even if you miss a few doses when you’re first starting out.
The chart on the left shows what people think progress should look like (ie; continuous improvement). The second chart shows what progress typically looks like (ie; a few missed doses but constantly working towards taking meds regularly).
Transitioning to adult health care
If you were perinatally infected (born with HIV), or you were behaviorally infected later on, you may have started HIV care with either a pediatrician or an adult provider. In either case, your health care needs will change as you get older and you’ll eventually need to transfer your health care to an adult doctor or nurse practitioner. It’s normal to feel uncomfortable about changing providers, but you’ll likely feel better if you’re well prepared to make the transition.
Learn more about making the transition to adult health care:
When visiting a health care provider for the first time, it’s helpful to bring an HIV health record with you. This is a record that will help your provider learn about your history with HIV. Check out the sample HIV Health Records first to see how to use them.
- Sample HIV Health Record – Complicated Regimen
- Sample HIV Health Record – Simple Regimen
- Blank HIV Health Record
Adapted from:
Thurston, I. B., Bogart, L.M., Wachman, M., Closson, E. F., Skeer, M. R., & Mimiaga, M. J. Adaptation and Pilot Trial of an HIV Medication Adherence Intervention for Adolescents and Young Adults. Cognitive and Behavioral Practice, Special Issue.
Mimiaga, M.J., Bogart, L.M., Thurston, I.B., Skeer, M.R., Wachman, M., Closson, E.F., & Safren, S.A. (2012). Positive Strategies to Enhance Problem-Solving Skills: Positive STEPS. Therapist & Participant Manuals.
Thurston, I. B., Bogart, L. M., Fields, E. L., Skeer, M. R., Sticklor, L., Closson, E. F., Safren, S. A., & Mimiaga, M. J. (May 2011). Qualitative Comparison of Barriers to Antiretroviral Medication Adherence among HIV-infected Youth. Poster presented at M. Judah Folkman Research Day, Boston, MA.
Living with HIV: Dealing With Your Emotions
Posted under Health Guides. Updated 20 March 2018.
Your feelings can affect when and why you take your HIV medications. Both negative and positive emotions can affect how well you stick to your med schedule. It’s possible that you might not even realize the connection between your mood and taking your meds, but ask yourself the following questions:
- When you’re in a good mood, do you tend to stick to your med schedule better?
- What about when you’re in a bad mood?
- When you feel depressed, angry, or have other negative feelings, is it difficult for you to take your meds on time every day?
Below you’ll find different strategies that you can use to prevent negative or positive moods from getting in the way of taking your medications.
Knowing your values
Knowing what’s important to you can help you take good care of yourself. All values and goals will be easier to achieve if you’re healthy. For example, if money is important to you, you have to be healthy enough to go to work. If you like to volunteer in your community, you won’t be able to do so if you’re sick. Check out these value cards and think about what matters to you.
Value CardsBehavior activation – pleasant activities
Doing fun things is a way to begin to feel better and protect yourself from getting depressed. Try making a list of hobbies you enjoy or new activities you would like to try. The activity can be as simple as “practicing deep breathing” or something totally new, like trying a new exercise class or joining a club at school. Look at your list when you need ideas of fun things to do.Check out our list of pleasant activities for ideas:
Adapted from:
Thurston, I. B., Bogart, L.M., Wachman, M., Closson, E. F., Skeer, M. R., & Mimiaga, M. J. (Under Review). Adaptation and Pilot Trial of an HIV Medication Adherence Intervention for Adolescents and Young Adults. Cognitive and Behavioral Practice, Special Issue.
Mimiaga, M.J., Bogart, L.M., Thurston, I.B., Skeer, M.R., Wachman, M., Closson, E.F., & Safren, S.A. (2012). Positive Strategies to Enhance Problem-Solving Skills: Positive STEPS. Therapist & Participant Manuals.
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Relaxation + guided imagery exercise (10 minutes)
If you’re experiencing emotions that get in the way of taking your meds, relaxation can help. Relaxation can be achieved through exercises, one of which is guided imagery. It’s important for you to do this as often as you can (at least several times a week) for it to be most helpful.
Relaxation/mood apps
There are a variety of relaxation apps available that you can download and use on a smartphone or device.
Some free relaxation apps include:
- Relax with Andrew Johnson Lite (iPhone/iPad) (Android): This app is the perfect way to unwind and de-stress, and it also has had great success in therapeutic settings. The App teaches relaxation techniques, which have helped with ME, pain control, insomnia, post traumatic stress disorder and many other stress symptoms.
- Free Relaxing Nature Sounds and SPA Music (iPhone/iPad): This app has beautiful soundscapes that will help you to get away from the noise of the city, feel free from the problems that surround you and help you fall asleep.
- Smiling Mind (iPhone/iPad): Smiling Mind is a unique web and App-based program developed by a team of psychologists with expertise in youth and adolescent therapy, Mindfulness Meditation and web-based wellness programs. Smiling Mind is a free tool that will assist in improving the lives of young people, and is available online or as a smartphone App.
How to deal with positive mood getting in the way
When you’re feeling good, you might not want to take your medications because it might remind you about having HIV. Thinking about HIV could bring up negative thoughts. However, it’s important to remember that even when things are going well, you should keep taking your medications as prescribed. If you ignore your meds, you could start feeling sick or feeling guilty about not taking the meds. Skipping meds could become a habit that’s hard to break.
Here are some suggestions to keep positive moods from getting in the way of taking your meds:
- Talking to a friend/family member/support person who can encourage you to keep up with your meds if you’ve noticed that you’re thinking about skipping meds
- Use the guided imagery skills above to develop a more positive way of seeing your HIV meds so that even when you’re happy, thinking about your meds doesn’t bring you down
- Thinking about your values – holding on to values so that you remember what’s important, why you’re taking your meds in the first place (making sure that your decision to take your meds is based on what’s important to you, not your mood)
Adapted from:
Thurston, I. B., Bogart, L.M., Wachman, M., Closson, E. F., Skeer, M. R., & Mimiaga, M. J. Adaptation and Pilot Trial of an HIV Medication Adherence Intervention for Adolescents and Young Adults. Cognitive and Behavioral Practice, Special Issue.
Mimiaga, M.J., Bogart, L.M., Thurston, I.B., Skeer, M.R., Wachman, M., Closson, E.F., & Safren, S.A. (2012). Positive Strategies to Enhance Problem-Solving Skills: Positive STEPS. Therapist & Participant Manuals.
Thurston, I. B., Bogart, L. M., Fields, E. L., Skeer, M. R., Sticklor, L., Closson, E. F., Safren, S. A., & Mimiaga, M. J. (May 2011). Qualitative Comparison of Barriers to Antiretroviral Medication Adherence among HIV-infected Youth. Poster presented at M. Judah Folkman Research Day, Boston, MA.
Living with HIV: Social Life
Posted under Health Guides. Updated 20 March 2018.
How friendships help/hurt med adherence
Friends often impact our everyday decisions. For example, your friends can affect your decision to take your meds in either a positive or negative way. However, it’s important to know that your friendships and social activities can support and not get in the way of your adherence goals.
How do friendships help med adherence?
Your friends can:
- Remind you to take your meds on time and show they care about your health
- Be there to support you
- Help you focus on other things such as education, sports, art, or entertainment
- Through friendships, you don’t have to keep your feelings to yourself because you have people to talk to about living with HIV
How do friendships present obstacles to med adherence?
Your friends may not:
- Prioritize health
- Know your status; you may be afraid of how they’ll respond
- Be insensitive about your status
- Not respect your privacy
- You may also be tempted by friends who engage in drug/alcohol use
Tips for taking meds when out with friends
Taking medicine is very common, but you may be more worried about it because of your HIV status. People with HIV may feel vulnerable in social situations and may imagine that other people notice things (such as taking meds) more than they do.
Remember that telling people about your meds is a choice. If someone asks you about what you’re taking and you don’t feel comfortable telling them that you’re on HIV meds, here are some strategies you can use:
Half-truths:
- Say that you’re taking meds for your health or a medical condition
- Say your meds are for something else such as allergies or a headache
- Say that your doctor prescribed them for you
Humor:
- You can use humor to get out of the conversation about your meds
Avoid taking your meds when out with friends:
- Take your meds before you go out
- Set a reminder so that you take your meds when you get home
How to take your meds in public (privately):
- Take your meds in the car
- Go to the bathroom
- Say that you forgot your wallet in the car
Substance use
Alcohol and marijuana are both used frequently in social situations and impede decision-making. Learn more about substance use and how it can effect your body by reading the guides listed below.
Alcohol: Scientists used to think that people’s brains were fully developed by the age of 10, but now there’s evidence that shows that the brain isn’t fully developed until people are in their 20’s, or even 30’s. What this means for you as a teen is that your brain is still developing, and alcohol could impair that development… read the full guide
Marijuana: Even after the immediate effects of marijuana use subside, marijuana has negative effects on the brain. Because the chemical THC directly affects the brain, marijuana use can cause many problems which can last for days, or even weeks, including… read the full guide
Adapted from:
Thurston, I. B., Bogart, L.M., Wachman, M., Closson, E. F., Skeer, M. R., & Mimiaga, M. J. Adaptation and Pilot Trial of an HIV Medication Adherence Intervention for Adolescents and Young Adults. Cognitive and Behavioral Practice, Special Issue.
Mimiaga, M.J., Bogart, L.M., Thurston, I.B., Skeer, M.R., Wachman, M., Closson, E.F., & Safren, S.A. (2012). Positive Strategies to Enhance Problem-Solving Skills: Positive STEPS. Therapist & Participant Manuals.
Thurston, I. B., Bogart, L. M., Fields, E. L., Skeer, M. R., Sticklor, L., Closson, E. F., Safren, S. A., & Mimiaga, M. J. (May 2011). Qualitative Comparison of Barriers to Antiretroviral Medication Adherence among HIV-infected Youth. Poster presented at M. Judah Folkman Research Day, Boston, MA.
Living with HIV: Disclosure
Posted under Health Guides. Updated 20 March 2018.
Making the decision
Is it appropriate to disclose?
Some people choose to disclose to many others, some people choose to disclose to a few, some people choose one, and some don’t disclose at all.
These are some things to consider when deciding whether or not it’s appropriate to disclose:
- Who do you want to tell?
- Why do you want them to know?
- What are the advantages and disadvantages (pros and cons) of telling them?
- How will disclosing my HIV status affect me – will I regret it later?
- Will I experience stigma? According to The Stigma Project, HIV stigma refers to the HIV-related shame, fear, prejudice, discrimination, guilt, and lack of knowledge that exist in the world at large. It affects the health and well-being of both HIV-positive and HIV-negative individuals.
Remember that disclosing (telling people about) your HIV status is a personal choice. There may be advantages and disadvantages to disclosing your status. It can help to write down a list of potential pros/cons.
In the sample below, Mike is thinking about disclosing his status to a friend. You may have different concerns depending on the type of relationship you have with the person you’re thinking about telling.
Who to tell
Here are some questions to ask yourself about who you want to disclose your status to:
- What does he/she know about HIV?
- What are his/her attitudes about HIV?
- Can he/she keep a secret?
- What would happen if he/she didn’t keep my status a secret?
- Is sharing my status with this person going to be a relief for me?
- Will this person be supportive towards me?
How to tell
Here are some guidelines for how to tell people about your HIV status:
- Decide where/when you want to tell
- Practice
- Be honest and direct
- Imagine ahead of time how you might cope with different responses
- End with a discussion of the next step
What happens after
Check out the following resources for real life examples of post-disclosure experiences:
- HIV and disclosure: In 2012, teens and young adults in the Boston Children’s Hospital community wrote a series of blogs about their experiences living with HIV. The material reflects their struggles, worries, and resilience, and the entries cover various aspects of daily life, including school, friendships, and worries about the future: “Living with HIV: Disclosure”
Adapted from:
Thurston, I. B., Bogart, L.M., Wachman, M., Closson, E. F., Skeer, M. R., & Mimiaga, M. J. Adaptation and Pilot Trial of an HIV Medication Adherence Intervention for Adolescents and Young Adults. Cognitive and Behavioral Practice, Special Issue.
Mimiaga, M.J., Bogart, L.M., Thurston, I.B., Skeer, M.R., Wachman, M., Closson, E.F., & Safren, S.A. (2012). Positive Strategies to Enhance Problem-Solving Skills: Positive STEPS. Therapist & Participant Manuals.
Finocchario-Kessler, S., Catley, D., Thomson, D., Bradley-Ewing, A., Berkley-Patton, J., & Goggin, K. (2012). Patient communication tools to enhance ART adherence counseling in low and high resource settings. Patient Education and Counseling, 89(1), 163-170. doi: 10.1016/j.pec.2012.03.020
Thurston, I. B., Bogart, L. M., Fields, E. L., Skeer, M. R., Sticklor, L., Closson, E. F., Safren, S. A., & Mimiaga, M. J. (May 2011). Qualitative Comparison of Barriers to Antiretroviral Medication Adherence among HIV-infected Youth. Poster presented at M. Judah Folkman Research Day, Boston, MA.
