Breakthrough treatments like antiretroviral therapy (ART) help people with HIV live longer, healthier lives. But ART is just one component of healthy living with HIV. Self-care, also referred to as self-management, is vital to your well-being.
The World Health Organization describes self-care as “the ability of individuals, families, and communities to promote health, prevent disease, maintain health, and cope with illness and disability with or without the support of a health care provider.” In other words, this approach involves taking steps on your own to maintain your overall mental, emotional, and physical health.
Self-care remains a crucial part of health management for people who are HIV-positive. There are many ways you can incorporate self-care into your health care routine for HIV.
Recently, 129 myHIVteam members in the United States participated in a survey about aspects of self-care. Of those members, 94 percent said they believe self-care is an important part of their HIV management. There are many reasons why self-care is crucial to life with HIV.
Improvements in HIV treatment have changed the way the disease is managed. Since the introduction of ART, HIV has been recognized as a chronic illness, rather than a terminal one.
The increase in life expectancy for people with HIV brought about by ART also means they may develop other chronic conditions that affect the general population. One study in New York City, for instance, found the three leading non-HIV-related causes of death in people with HIV were substance abuse, cardiovascular disease, and cancer.
This discovery led health care experts to recommend providing more holistic care that addresses all aspects of a person’s physical and mental health — not just managing their HIV. This includes focusing on preventing chronic illnesses, as well as considering the emotional and social issues that may arise as a result of living with HIV.
Another aspect of long-term care for HIV is viral suppression. Viral suppression occurs when a person’s viral load, or the amount of HIV in their blood, is brought to a level that’s undetectable in blood tests. The aim of HIV treatment is to reach and maintain an undetectable viral load.
Self-care and self-management are key to viral suppression. According to the National Institute of Allergy and Infectious Diseases, almost all people who start taking their HIV medication daily as prescribed achieve an undetectable viral load within six months. Because of this, sticking to your treatment regimen plays a crucial role in managing your HIV.
Living with a chronic health condition like HIV can be emotionally challenging. It’s important to know that people with HIV have an increased risk for developing anxiety and mood disorders. For instance, people who are HIV-positive are two times more likely to develop depression than those who are HIV-negative.
Starting ART can also have different emotional effects. Some people may feel relieved that they are taking steps to keep themselves healthy. But many people also feel overwhelmed when facing a chronic illness. Additionally, certain antiretroviral medications may infrequently cause symptoms of sleep disturbances, anxiety, and depression. They could exacerbate existing mental health issues, as can HIV itself.
Because of these factors, addressing mental and emotional issues is a crucial aspect of self-care while living with HIV. Part of this involves finding the right resources to provide you with support.
According to the myHIVteam survey, 40 percent of participants reported they have easy access to mental health resources. However, 28 percent said their access to these resources has been impacted by the COVID-19 pandemic. Especially during these uncertain times, it’s important to ask your doctor for referrals and resources if you don’t know where to look for mental health support.
After diagnosis, the first step in managing HIV is starting antiretroviral therapy. Experts recommended starting ART right away.
The biggest part of self-care with HIV is adhering to your treatment plan. Once you decide on your ART regimen with your doctor, stick to it and take all your medications as directed. Doing so will ensure you get all possible benefits from them. If you have questions about how to take your medications, follow up with your doctor.
In the myHIVteam survey, 94 percent of participants reported that adhering to their HIV medication prescriptions is part of their self-care practice. Sticking to your treatment plan is the most important way you can take control of your own health.
Antiretroviral therapy works by preventing HIV from making copies of itself, ultimately reducing a person’s viral load. But even when you achieve an undetectable viral load, HIV is still present in your body in a dormant (inactive) state.
If a person with HIV interrupts their ART plan by missing doses, taking a break from therapy, or stopping treatment altogether, the virus reemerges and starts multiplying. This causes the viral load to return to a detectable level and start damaging the body. By taking every dose of your medication as directed, you prevent the reemergence of HIV in your body and help keep your viral load at an undetectable status.
Taking your medication as directed and achieving viral suppression may also allow you to eliminate the possibility of transmitting HIV to sexual partners. This approach is sometimes referred to as “Treatment as Prevention” (TasP) or "Undetectable = Untransmittable (U=U)."
Another part of self-care in HIV treatment is self-monitoring. This means informing your doctor of any changes you notice in your overall health and well-being. About 80 percent of myHIVteam members surveyed said that having open conversations with their health care providers is part of managing their HIV.
One common side effect of ART, for instance, is weight gain. If this is a concern for you, make sure to keep track of your weight and alert your doctor of any unintended changes.
Additionally, your viral load should be measured when you are first diagnosed with HIV, then regularly (at least once per year, but generally two to four times annually). Make sure you alert your doctor of any symptoms you experience. If you do start to experience symptoms, your viral load should be measured more frequently than usual.
Good nutrition is important to everyone, regardless of HIV status. But people living with HIV, in particular, can benefit from the role nutrition plays in keeping the immune system healthy and maintaining a healthy weight. In fact, 38 percent of myHIVteam members surveyed reported that maintaining a regular weight is part of their usual self-care routine.
Being diagnosed with HIV does not necessarily mean you have to make immediate or drastic changes to your diet. It may, however, mean you need to be more watchful of what you eat.
A balanced diet includes many whole, fresh foods.
While 51 percent of myHIVteam members surveyed reported they can easily access healthy foods, 20 percent said their access to healthy foods has been impacted by the COVID-19 pandemic.
If you aren’t sure about the right foods to support a healthy lifestyle, ask your doctor or a nutritional specialist for recommendations. It’s important to consult a health care professional before starting a new diet plan to ensure that what you are adding or taking away will benefit you specifically.
Exercise has a wide variety of physical and mental health benefits. It can boost your mood, reduce stress, sharpen focus, and improve sleep quality. Because of this, getting regular exercise is an important part of HIV self-care. Many myHIVteam members agree: 41 percent of those surveyed reported regular exercise as one of their self-care strategies.
Generally, people with HIV do not require any special types of exercise. However, certain physical activities, such as resistance training, can help prevent the loss of muscle mass and strength which occurs in some people living with HIV.
As always, talk to your doctor or physical therapist before starting a new exercise routine to make sure it’s right for you.
Have you experienced dental problems connected with HIV? If so, you’re not alone.
Oral health issues, such as dry mouth, gum disease, tooth decay, and tooth loss, are not uncommon for people with HIV. Therefore, it’s important to practice proper dental hygiene and keep an eye out for any changes in your oral health.
This involves making regular appointments with your dentist and following their instructions on keeping your teeth and gums healthy. If you notice any changes in your teeth or mouth, be sure to let your dentist know.
Self-care doesn’t just involve keeping your body healthy. Caring for your mental and emotional well-being is a crucial part of self-care with HIV.
Members of myHIVteam use many different methods when it comes to managing their mental health. In the recent survey, 24 percent of members surveyed reported seeing a therapist, 15 percent reported practicing meditation and/or yoga, and 14 percent reported using a meditation or mental health app for on-the-go support.
While HIV treatment has drastically improved, receiving a diagnosis of HIV can still be highly emotional. You may need time to process your diagnosis and adjust to life with HIV. That’s OK.
In many cases, mental health conditions are treatable. But your doctor may not be able to tell if you’re having symptoms of anxiety or depression just from your regular visits. Because of this, you should pay attention to your mental and emotional health.
You’re your own best advocate. If you or a loved one notices changes in your mood or behaviors, contact your doctor and ask for a referral to a mental health specialist.
In the past, the stigma associated with HIV made it challenging for some people to remain social after their diagnosis. Granted, these issues are not fully eliminated. However, the world is quickly catching up, and having HIV no longer means social isolation.
Taking care to cultivate and tend to your social relationships is a vital part of self-care. In fact, 36 percent of surveyed myHIVteam members said it is important for them to maintain a social life as part of their self-care plan.
If you are newly diagnosed, reaching out to friends and family members for emotional support can be an integral part of self-care. Even if you’ve lived with HIV for many years, make sure you take the time to maintain the relationships that matter most to you.
You’re not alone with HIV. There are many supportive resources for people diagnosed with HIV/AIDS and their loved ones, including the online community at myHIVteam. Members provide each other with continual social support, advice, and understanding.
How do you make sure to take care of yourself while managing HIV? Do you have any tips for others about living a balanced life with HIV? Leave a comment below or start a conversation on myHIVteam.