If you’re living with HIV, having emotional support as you navigate your health care can be a game changer.
One myHIVteam member wrote, “I’m going through some emotional stuff,” to which another member responded, “This too will pass! Plus, you have this team of people for support!”
The member later wrote: “Things are a little better today. I had a meltdown yesterday, and it was pretty bad. Fortunately, I have good people on my support team. … It's good to hear from you. Thank you for checking in on me.”
Feeling emotionally supported along your HIV journey is crucial. A survey of 193 myHIVteam members in the United States showed that nearly two-thirds of the respondents felt stigmatized because of their HIV-positive status, and nearly half of them felt alone.
Read on to learn about how you can receive emotional support as a person with HIV.
Mental health conditions, such as depression, are common among people with HIV. In fact, according to a study published in 2019, 39 percent of people with HIV report experiencing depression.
Talking to a trained professional about your emotional state can help you navigate the changes in your life. There are different types of mental health professionals who can help you in different ways. For example, a therapist or psychologist can help you through different types of therapy, such as cognitive behavioral therapy and acceptance and commitment therapy, while a psychiatrist can prescribe mental health medications.
Talk to your current medical provider about getting referred to a mental health specialist. Truly comprehensive HIV/AIDS care is more than just getting on an antiretroviral treatment. It also means making sure you have the social support you need for your emotional well-being.
As one myHIVteam member wrote, “Most people with HIV can live long and healthy lives if they get and stay on treatment. There will be a period of adjustment. People who are newly diagnosed can feel many emotions — sadness, hopelessness, and even anger. Pay attention to your mental health.”
One myHIVteam member shared, “Next month marks one year for me. I usually feel OK. However, tonight I’m feeling really really lonely. I just want to speak with someone face to face about everything.”
Other members wrote about their experiences seeking professional mental health support and working it into their routine. “At my psychiatrist appointment. Mental health is everything!!! 🤩,” wrote one member. “I have my meeting with my mental health worker before class,” shared another.
Another important part of feeling emotionally supported is connecting with others who are going through similar experiences. Support groups, in person or online, are a great place to meet and talk with other people with HIV.
You can attend an HIV-specific support group or a support group more generally focused on mental health. Your health care provider can give you tips on finding a group that might be right for you. HIV health care centers often host support groups themselves.
Having the support of your loved ones is important, but connecting on an emotional level can be difficult if they don’t fully understand the mental toll of living with HIV. Building a community of people who understand each other is a great way to give and get emotional support.
One myHIVteam member wrote, “Meeting with my minister today to discuss possible services for our HIV-positive sisters and brothers in and near my area, such as a truly safe support system run by peers.”
Your community may have similar opportunities to learn from health care workers and your peers in a safe, open environment. Support groups can also have a positive impact on key health outcomes for people with HIV, like improving treatment adherence and quality of life.
Practicing self-acceptance and self-care are good first steps to opening up about your emotional state to other people. A lot of people find themselves “splitting” the way they portray themselves publicly and privately due to their HIV status. This can be exhausting.
It’s natural to want to protect your privacy if you don’t know whether you can trust the people around you, but in some cases, you might be operating from a place of shame or fear. Practicing self-acceptance can help you define that boundary and know when to seek emotional support.
One myHIVteam member wrote about their perspective on self-acceptance: “Many of my feelings and thoughts were directed toward my value and dignity as a human being. Looking back now, after 18 years of living with HIV, I say to myself, ‘What a wonderful human being I am. What a good person I am, with dignity and self-worth.’”
Knowing your worth is a crucial first step to being able to seek support from others. Although self-acceptance is not an overnight or linear process, you can still engage in self-care behaviors along the way. One myHIVteam member wrote: “I am more determined now than ever before to focus on my mental health and my immune system.”
You may not think of emotional support as a major factor in medical HIV care, but it can actually play a part in how engaged you feel in your treatment. Telling your doctor, social worker, or other case management professional about how you’re feeling can open the door to finding additional resources. It can also simply help you feel heard in the moment.
In addition, a medical provider might be able to shed light on the emotional symptoms you’re experiencing. Some HIV medications, like antiretroviral therapy, can have mental health side effects like symptoms of depression and anxiety, as well as trouble sleeping.
Sharing your feelings with your doctor can be intimidating, so here are some tips before you go into your appointment:
Even if you have well-meaning, caring people in your life who empathize with your condition, they might not know how to best support you. Sometimes, asking for help with concrete tasks can be a positive way to feel supported.
Some examples of things you can ask for help with are getting to and from your medical appointments, running errands, talking through decisions, and supporting your decision to disclose or not disclose your HIV status to mutual friends or other family members.
Your mental health is just as important as your physical health, since it can seriously impact your quality of life. Talking to your loved ones about what you need from them is a way to share emotional vulnerability and form an even closer bond.
Psychosocial factors, like how supported you feel by those closest to you, may even affect immune health outcomes in people with HIV. This is just one reason why taking care of your mental health, and enlisting the help of the people around you to do it, is important to HIV care.
On myHIVteam, the social network for people with HIV and their loved ones, more than 41,000 members come together to ask questions, give advice, and share their stories with others who understand life with HIV.
How have you found emotional support with HIV? How has this support affected your HIV treatment journey? Share your experience in the comments below, or start a conversation by posting on your Activities page.
Get updates directly to your inbox.
Become a member to get even more:
A myHIVteam Member
No one seems to be interested in learning about a disease until it directly affects one of their loved ones. There are so many different illnesses out there, who has that much time to learn about all… read more
We'd love to hear from you! Please share your name and email to post and read comments.
You'll also get the latest articles directly to your inbox.