Living with HIV can increase your risk of isolation, but there are things you can do to create and keep your social connections.
When you think about all the things that contribute to good health, you might not realize the importance of social connection.
Loneliness and isolation are recognized
People with HIV have an increased risk of loneliness. Older people living with HIV are even more at risk of loneliness. Loneliness can affect your physical and mental health no matter what age you are or what health conditions you may have.
Making connections with others can improve your health and ability to manage your HIV. As with other health habits, making and maintaining social connections takes effort.
You deserve to have a supportive and loving network. It feels good to be connected with others, plus it’s good for your health.
Stigma exists when negative ideas develop about a person because of their situation or condition. People with HIV continue to experience stigma. This can increase the risk of loneliness in different ways.
If you have HIV and you’ve internalized negative ideas about people with HIV, you start to believe those things about yourself. This can leave you feeling unworthy of connection and care.
If you think that others judge or think badly about people with HIV, you will be less likely to seek care or spend time with others.
Greg Mann is the coordinator of support services at the AIDS Committee of Cambridge, Kitchener, Waterloo, and Area (ACCKWA) in Ontario, Canada. Mann sees many folks with HIV who experience loneliness and isolation. Stigma is a major reason for this.
“HIV can put someone at risk of loneliness due to social stigma and discrimination, leading to isolation and limited social connections,” explained Mann.
He sees this starting at diagnosis. “A constant in receiving an HIV diagnosis is the enduring stigma that often hinders individuals from moving forward,” said Mann. It takes extra energy and courage to reach out when you’re feeling this way.
Being lonely also carries a stigma. Loneliness is common, yet people are afraid to talk about it. A 2019 study from the United Kingdom found that 81% of young people felt afraid of anyone finding out that they were feeling lonely. This creates another barrier for people who are feeling alone.
Major advances in HIV care mean that people with HIV are thriving and living full lives. Antiretroviral therapy (ART) can lower your viral load to an undetectable level. When HIV is undetectable, it can’t be spread to another person.
Even though HIV is a manageable, chronic condition, stigma remains. There is still a lack of understanding about what it means to live with HIV, how HIV is spread, and how it can be prevented.
These beliefs contribute to negative ideas about people with HIV, increasing the risk of loneliness.
“Loneliness can have significant negative health effects,” Mann explained. “Studies have shown a strong link between loneliness and cardiovascular problems. Loneliness can impair the immune system, making individuals more susceptible to infections and diseases.”
People who lack a support system have a harder time managing their HIV. Research suggests that people who are more isolated are less likely to take ART consistently.
Mann pointed out that there are also many mental health risks of loneliness and isolation.
“Loneliness has been associated with accelerated cognitive decline and an increased risk of dementia. Loneliness often co-occurs with depression and anxiety, creating a vicious cycle of negative emotions.”
Having a solid support network is good for your health. Mann described several programs that ACCKWA runs to support people with HIV to get connected.
“We hold social gatherings for HIV-positive folks where [they] can find support in sharing their stories, ask for help, or just have someone listen to them. Providing an open safe space where people feel comfortable and are able to establish rapport with others is helpful.”
Ask your healthcare team about support groups or meetups in your area.
Mann also highlighted the benefits of peer support. “We use peers in our programs. [These programs get folks] out of their homes to develop new coping mechanisms and skills.”
Research supports this. These connections are good for everyone involved. HIV care programs with a peer-support element have better outcomes compared to a more traditional clinic model. Purposeful connections with others help to break down stigma and create community. Both are powerful tools in the fight against loneliness.
Finding a supportive and safe clinic to get your HIV care matters. Connections outside of your healthcare services are also important to prevent loneliness and isolation.
If you’re feeling lonely, it can be hard to reach out and maintain relationships or make new connections.
Try some of these small steps:
- send a text message to check in with a family member
- arrange to go for a walk or go shopping with a friend
- say hi to a neighbor you don’t know very well
- join a club to try something new
- boost your health by volunteering for a cause that feels important to you
- ask about groups or events you can attend through your HIV care clinic
A mental health professional can be another important person in your network. Adjusting to a new diagnosis or just dealing with the ongoing nature of a chronic condition can be a source of stress.
If you notice that you’re feeling sad, anxious, or hopeless, it’s a good idea to reach out.
If you’re having trouble with taking ART or managing other aspects of your health, getting extra mental health support might help.
There may be mental health supports through the clinic where you get your HIV care. If not, ask a trusted healthcare professional if they have any recommendations.
Loneliness is associated with several physical and mental health risks. Loneliness is common, and people with HIV are at greater risk of loneliness due to lingering stigma about living with HIV.
Attending peer support programs, finding a welcoming and safe healthcare team, and building a social network are all things that can help to prevent or reduce loneliness.
Loneliness can affect anyone, but those living with HIV, especially older adults with HIV, have a greater risk of isolation. Stigma can increase the risk of loneliness.
Isolation has several health consequences, but there are things you can do.
You can try to connect with a supportive HIV care center or consider joining a peer support group. You can also try to make new connections through work, volunteering, classes, or hobbies.
