Taking care of your HIV and mental health

HIV and poor mental health have been linked for some time. People living with HIV are more likely to have certain mental health conditions such as depression, anxiety, and post-traumatic stress disorder (PTSD). Each is a serious mental health illness that can disrupt how a person gets by. HIV affects the most vulnerable and marginalized in society; these are groups that are also disproportionately affected by mental health issues. Mental health can also be impacted by biological and environmental factors and life events.

Poorer mental health is linked to poorer sexual health outcomes and can increase the likelihood of acquiring HIV. Moreover, poor mental health can impact medication adherence and engagement in services for people already living with HIV. Mental wellness is a major factor in quality of life and key to the well-being of people living with HIV.  

Mental health conditions can be managed and treated with the right support and diagnoses. 

UNAIDS and the World Health Organization have called for better HIV and mental health service integration. They state that “primary health-care providers must be trained to recognize and treat common mental health and substance-use disorders and refer people to expert care.” 

Integrated HIV and mental health services are not available to all. Where you live in the world or what part of the country your clinic is based has a considerable impact on the type of HIV and mental health support you receive. It can also impact how much you may have to self-advocate for the right care and support. Here are some top tips to consider for mental wellness while living with HIV. 

1. Check the side effects of your HIV medication 

Some antiretroviral therapies (anti-HIV medication) can have side effects affecting mental health, particularly depression. Similarly, some HIV treatments can disrupt sleep and cause fatigue, which can negatively affect mental health. 

Before you start treatment, your medical team should tell you about the common side effects associated with your medication; double-check by asking them. If your medication may cause mental health issues, it may be worth a conversation about whether changing them is appropriate.

Editor’s note: The most commonly prescribed medications for first-time HIV treatment are associated with rare reports of depression and suicidal ideation, primarily among people with a history of psychiatric illnesses. These are the INSTIs (integrase strand transfer inhibitors) and are found in Biktarvy, Cabenuva, and Dovato, among others. Potential side effects of NNRTIs (non-nucleoside reverse transcriptase inhibitors) include neuropsychiatric events such as depression, sleep disturbances, and dizziness. These medications include Sustiva, found in Atripla, and Pifeltro, found in Delstrigo. See the March + April annual HIV drug guide issue for  more information.

2. Note how your mental health affects you 

Journaling your feelings can help you manage your stress. It can also be useful to jot down how your mental health is impacting you. Writing about the impact on your mood, your ability to socialize, work, and sleep provides a useful picture to get a sense of what’s happening. Medical staff will also ask you about this, which is another reason it can be helpful to have your notes ready. If this is too difficult for you, ask a trusted person to help. They may have noticed changes in you if your mental health has declined and can share their observations of how it’s negatively impacting you day to day.

3. Communicate with your medical team 

Many mental health conditions can be managed and treated. A core element of your mental health support could be through medical professionals. 

Being honest with your HIV team is important. During your appointment, you should be asked about how you are feeling and your general well-being. If you are not asked, bring it up yourself. Having a list of things you wish to talk about can be a simple, helpful way to remember all that you would like to share. By understanding how you’re feeling, your care provider may be able to refer you to additional support, such as peer support or more specialized mental health services.

You may choose to seek your own mental health support, independent of your HIV clinic. Depending on where you live, you may or may not be legally required to share your HIV status with others. It can be useful to share all your medical conditions with different medical teams so that they can properly support you. It can help to receive holistic support and avoid drug interactions, for example. If you are receiving mental health support and HIV care in separate places, consider letting your medical teams know and decide if you are comfortable having them communicate with each other.

4. Check for drug interactions 

A drug interaction is when one medication affects how another medication works; a drug may not be as effective, or its side effects could be worsened. For example, St John’s wort is used by many people as an herbal remedy for depression and anxiety. However, St John’s wort can interfere with how well many HIV medications work, so it is often not recommended for people living with HIV.

If your medical team is aware of all the medications you are taking, they should check for drug interactions. However, if they are unaware, it is worth checking yourself. The Liverpool HIV Drug Interaction Checker can help you to do this: hiv-druginteractions.org/checker. This can ideally help you to ask informed questions of your care provider.

5. Develop new adherence techniques 

Poor mental health can impact your motivation, memory, and general zest for life, including whether you feel life is worth living. All of which can affect how consistently you take your medication (your adherence). However difficult it may be, try to stay on track with your treatment. Adherence is key to avoiding any possible long-term health consequences of missing doses. Adherence techniques include: 

  • Take your medication around the same time every day; set a daily alarm.
  • Have the medication in a visible place for you to see.
  • Ask a trusted person to remind you.
  • Carry a medication pill keychain, so that your medication is with you when you’re on the go.
  • Have a “days of the week” pill container, so you can track whether you’ve taken your medication that day.
  • Take your medication at the same time as a daily activity such as brushing your teeth after a meal.
  • Speak to your medical team if you’re struggling with adherence.

6. Stay connected 

Poor mental health can play tricks with our thoughts, and lead us into taking actions that aren’t the best for staying well. Self-isolation is a major detriment to mental health. This may happen for a variety of reasons, including low self-esteem and feeling unmotivated. However, socializing and interacting with other people can be great for improving your mental health.

How you choose to socialize is up to you, but it can include making time to see family and friends, or attending support groups where you can share how you’re feeling with people who are going through similar experiences. It may also be helpful to think about connecting with people online or face to face, depending on your preference, comfort level, and what you feel will be best for you.

7. Make a note of any life changes 

Different things can impact mental health, including biological factors and life events. For example, menopause is associated with poor mental health, in part due to changes in hormone levels when people enter menopause. Individuals can experience depression during and after pregnancy (known as prenatal depression and postpartum depression) and anxiety during and after pregnancy (known as prenatal anxiety and postpartum anxiety). Certain contraception can negatively affect your mental health.

An HIV diagnosis can be difficult and even traumatic for some people, triggering or exacerbating mental health conditions. Your transmission route can also impact your mental health. People with a history of substance use and intimate partner violence also have poorer mental health. Also, higher rates of psychotic disorders have been found in young adults who were born with HIV, due to a number of factors, which may include lifelong exposure to the virus and its impact on the neurological system and/or the social stigma of navigating complex issues like disclosure and the onset of sexual desire in adolescence and the fear of disclosing one’s status. 

If you have been living with HIV for a long time or live where access to HIV treatment is less consistent, then you may have experienced AIDS-related illnesses or loved ones dying. These are all traumas that can gravely impact your mental health.

Trauma-informed care and understanding how different life events might impact your mental health can help manage that. Hopefully, recognizing your experiences will allow you to see yourself as a full human being deserving of support and kindness. 

8. Recognize the stressors that are beyond your control 

Managing stress is an effective way to improve your mental health. There are different ways to do this. 

Recognizing that some stressors are out of your control, however, is also important. Unhealthy and violent relationships, poverty and discrimination all significantly impact a person’s mental health, and there are no easy ways to overcome these, but your medical team and local HIV support groups may be able to refer you to additional support.

9. Learn more about HIV 

With access to treatment, HIV is a manageable health condition. When a person living with HIV has a viral load that is undetectable as a result of consistent antiretroviral treatment, they are unable to transmit the virus to a sexual partner. This is known as Undetectable equals Untransmittable, or U=U. Being undetectable also means that the possibility of HIV being passed to a baby during pregnancy, childbirth, or breastfeeding is greatly reduced. 

However, HIV is still a misunderstood health condition, leading to stigma. HIV stigma is discrimination that impacts people living with HIV (and sometimes their loved ones). It can result in people with HIV being treated badly, and it can also affect how they feel about themselves.

Learning about the realities of HIV and keeping up to date with the latest information can help lessen self-stigma. Joining peer support groups, talking to your HIV medical team, or checking trusted resources (such as aidsmap.com, Positively Aware and TheBody.com) can help.

10. Exercise and well-being 

Physical activity is a great way to improve your mental health. If your motivation is low, set bite-sized goals. This may include going for a 10-minute walk each morning or regularly stretching. Having an accountability partner who checks in with you—or better yet, exercises with you (movement and socializing)—is great! Any physical movement positively improves mood.

Editor’s note: CJE SeniorLife in Chicago offers a free weekly 30-minute Otago exercise class on Zoom for people who are LBGTQ or living with HIV, as well as their allies. The program started as a collaboration with Positively Aware. Join at cje.net/otago or e-mail Andy Rapoport at andy.rapoport@cje.net or call (773) 508-1055.

11. Eat and drink well 

Research shows a link between what we eat and how we feel. Missing meals or not drinking enough water can lead to low blood sugar and dehydration—both of which can impact your mood.

Reduce your caffeine intake, especially late in the day (it can affect your sleep quality). Although alcohol and other drugs may feel like they help—because they make you feel numb and seemingly relaxed—drug misuse and poor mental health are closely linked. 

Closing thoughts 

There are no quick fixes when it comes to taking care of yourself. It’s the small consistent acts that have the biggest impact. Mental health “recovery” is complicated. It may be easier to think about what makes you feel “less bad” rather than “better” in the early stages. You may find that some tools are more effective at key points in your life, while others are generally helpful. It’s useful to reflect on what works for you and how you feel after doing them. 

Bakita Kasadha is a writer, poet, and health researcher. She's currently a qualitative researcher at the University of Oxford (UK) working on a study exploring infant feeding decisions among new mothers and birthing parents living with HIV.