Coping and Living With HIV

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The prognosis for infection with human immunodeficiency virus (HIV) is no longer a death sentence in the United States. Most people who test positive for HIV in developed countries live long and healthy lives. This is thanks to highly effective antiretroviral medications that prevent the virus from destroying the immune system or even, in most cases, doing enough damage to allow for the development of significant symptoms. Even so, there are a number of emotional and physical challenges of living with HIV that are unique to this particular condition.

Emotional

In spite of the advances in treating HIV, finding out you're infected with the virus can be frightening, life-altering, and overwhelming. Even after you've come to terms with your diagnosis and settled into therapy, you're likely to experience difficult feelings—in particular, anxiety and depression that often evolve from having a chronic disease.

Fear

Myths and misconceptions about HIV abound and can make it difficult to live with HIV. But knowledge is empowering and will help you be a good advocate for your own health.

One of the most effective ways to deal with hearing that you're HIV positive is to learn all you can about your diagnosis and the infection itself. Most importantly, know that you do not have AIDS (acquired immunodeficiency disease).

An HIV-positive diagnosis does not mean you have AIDS, nor are you destined to develop this life-threatening disease. Now that you've been diagnosed, you can work to head off the development of AIDS with medication.

Overwhelm

There are a number of antiretroviral drugs available to help treat your illness. Having so many options makes today's HIV treatments more effective than ever before. But when you're newly diagnosed, treatment can seem daunting, overwhelming, and confusing.

Becoming familiar with available HIV medications, at the very least those in your treatment plan, will give you a feeling of control at a time when it seems you have anything but.

Learn the basics about your medications, including their names, dosages, and side effects. Ask questions. This will help you be a partner in determining the best course treatment for you, which can be empowering.

Depression

Depression affects over 10 million Americans each year, and it is estimated that one in four adults will have at least one depressive episode in their lifetime. Depression is common, but it is two to three times higher in those with HIV.

When you are depressed, it's harder to make decisions and to care for your overall health, which is key to managing your HIV.

Having feelings of intense sadness and grief after diagnosis is common, understandable, and OK. You must allow yourself to work through these feelings, with help from a professional, if needed.

It's when these feelings are long-lasting or interfere with your ability to cope with life, that they become a more serious problem. If you're feeling down for longer than a couple of weeks, bring it up to your doctor, as you may be experiencing depression. Help is available.

Physical

Supporting your immune system is imperative to your overall care, including how well your medications work for you. Taking care of yourself physically will also help you stay stronger and healthier overall.

Get Vaccinated

Prevention is key to maximizing your health when living with HIV. Getting vaccinated is one way to prevent serious, sometimes life-threatening infections.

It is important to note that while some immunizations are recommended for all adults living with HIV, others are recommended only for those considered to be at high risk for certain diseases—either because of travel, age, or increased rates of infection within vulnerable populations. There are specific vaccines that are recommended for people living with HIV.

Take Your Medication as Directed

The purpose of HIV therapy is to lower the amount of virus in the body and strengthen the immune system. Compliance—taking medication exactly as it's prescribed—is vital for treatment to work.

Sometimes this is easier said than done, but it's incredibly important to ensure your drugs work better over the long term. Skipping or forgetting doses, even occasionally, allows the virus a chance to multiply and gain a foot-hold. It also contributes to treatment failure.

Do what you can to take your medications exactly as directed. If you need help, there are simple apps that can be set to remind you to take your medications at the appropriate times.

Stay Physically Fit

Exercise has many health benefits, both physical and mental. Regular exercise is recommended for everyone, but it's especially important for those with a chronic illness such as HIV.

Regular physical activity can help counteract some of the long-term health impacts of living with HIV, such as osteoporosis and heart disease. Exercise can also help you combat weight gain—a side effect of some HIV medications.

Choose a type of exercise that you enjoy to help you stick with it.

Social

An HIV diagnosis can make you feel isolated and alone. Reaching out to others is important to help maintain a positive outlook.

Overcoming Stigma

We've come a long way when it comes to the social stigma of HIV, but there's still a long way to go. You may be surprised that your diagnosis brings up a host of your own biases regarding the disease as well. This isn't uncommon, so allow yourself some time of introspection. Remind yourself that you are not to blame for the disease.

Another worry is when, or if, to disclose your status, and to whom. Take some time to prepare yourself, and decide how much information you're willing to disclose if people start asking questions. Also know that you are under no obligation to disclose your status at work, if you would prefer not to; you have certain protections afforded to you under the Americans with Disabilities Act (ADA).

You and Your Partner

An HIV diagnosis not only affects you, but your partner as well. Your partner also needs time to grieve, feel sadness, worry, and come to terms with your HIV status. Remember, though, that mixed-status (serodiscordant) couples can and do live long, happy, healthy lives together.

Understanding the risks within mixed-status couples is important to keep everyone safe. But with antiretroviral treatment and safe sex practices, the risk of passing the disease to your partner is low.

HIV doesn't automatically prevent you from having children, if that is something you and your partner are interested in. There are options that make to having a child when you are HIV-positive safer. Important decisions need to be made in that regard, though, so it's critical that you have a doctor that can help you understand your options and help decide what is best for you.

Dating

People with HIV can enjoy healthy sexual relationships, but dating can be stressful. Telling a family member or close friend about being HIV positive is one thing. Sharing this fact with someone you're romantically interested in is entirely different.

If you find the prospect of disclosing your HIV status to someone you are dating daunting, first accept that this is normal and that it will take time to reach the point at which you're comfortable sharing this information. When you are ready to share, don't feel you have to apologize for or be ashamed of your status. Allow the person you are dating to make up their own mind about whether to continue the relationship.

If the person decides to end the relationship, try to remember that not all relationships work (regardless of having HIV or not). If the relationship moves on, make sure to follow steps to reduce risk of HIV infection for your partner.

Finding Support

Having a strong support network can be incredibly important to your emotional well-being. Understanding friends and family are great allies. Being able to talk with people who are in your shoes, who truly get what you are going through, can also be incredibly helpful. There are many ways to find a find an HIV support group:

  • HIV.gov, managed by the Department of Health and Human Services, has an online locator to help find services and support groups near you.
  • Meetup.com is a social media site where you can find local HIV support groups.
  • Your church, synagogue, or religious organization can be another source of support, if that option speaks to and feels right for you.
  • Call your state HIV/AIDS hotline for help, referrals to support groups and counseling services.
  • Ask your doctor for recommendations.

Practical

Of course, living with HIV means a lot of coordination of your care and figuring out how to afford it. Taking steps to set yourself up for success can go a very long way.

Finding the Right Doctor

Having a doctor that you know, trust, and feel comfortable turning to with questions and concerns is a must. There are benefits in choosing an HIV specialist. You'll benefit from their knowledge and experience, which will carry over into your treatment.

To find an HIV specialist, contact your local hospital, call HIV/AIDS service agencies in your area, and ask others with HIV for recommendations. Make sure to ask the doctor about their HIV practice, what services they offer, how long it takes to get an appointment, and if they accept your insurance.

Paying for HIV Care

Paying for HIV care is a huge undertaking. There are various services and programs that are available to help you manage the financial difficulties of living with HIV.

One program in particular, called the Ryan White HIV/AIDS program, works with communities to provide healthcare funds to over a half a million people living with HIV each year. 

In addition, pharmaceutical co-pay and patient assistance programs are available to assist with the cost of HIV drugs, while a number of insurance strategies may help reduce the annual cost of HIV care.

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