Most of us living with HIV/AIDS know intuitively that social isolation, something we all have experienced, is emotionally painful. There is now a growing body of evidence that it can also be deadly. A recent article in Heart noted that people living with HIV have a 50% greater risk for myocardial infarction (MI) than HIV-negative persons, as well as a greater risk for stroke. When combined with the known effects of social isolation on health outcomes (for example, persons who lack social support are 1.5 times more likely to have an MI), it becomes clear that individuals, health care providers and communities need to quickly address the problem of social isolation.
"Social isolation" is defined as a lack of contact and social support between an individual and other people. It differs from loneliness, which is a subjective experience that is often more temporary. Isolation shouldn't be confused with the number of people around an individual. A person living with HIV can be surrounded by crowds of people, yet because of stigma and discrimination, experience low self-worth or carry secrets that result in the very same subjective experience of social isolation. Even a perception of social disconnectedness has a negative impact on mental health, especially anxiety and depression.
The origins of social isolation among people living with HIV are not difficult to discern. HIV-related stigma results in economic, social and legal marginalization, as well as shame, discrimination (or fear of discrimination), low self-worth and trauma, all of which can lead to social withdrawal. Physical factors play a role, as well. HIV/AIDS can cause fatigue resulting in fewer social outings, neuropathy can reduce mobility and physical manifestations such as lipodystrophy can result in avoidance of social relationships, sex, work and sport activities.
The effects of social isolation are profound. In addition to an increase in cardiovascular risk noted above, a lack of connectedness can impact quality of life in many areas. For example, sleep can be disrupted, the immune system can become even more compromised because of increased stress hormones and mental health problems such as depression and anxiety can become more common. One study found that 8.2% of HIV-related deaths were the result of suicide, and social isolation is almost certainly a contributing factor. Even medication adherence can be adversely affected by social disconnectedness resulting from internalized stigma and low self-esteem. To make matters worse, many people turn to addictive behaviors such as opiates, stimulants and high-risk sex to find relief from the emotional pain of social isolation.
No one living with HIV/AIDS is immune from the impact of isolation. Numerous studies find that social isolation is a problem among the aging population in general, and especially among the elderly living with HIV. Younger persons are also affected. One study found that younger people living with HIV/AIDS experience more disconnectedness from family and friends than their older peers do. Researchers believe this is due to a combination of factors, including stigma, feeling blamed by others for their illness and younger people not identifying with the need to battle a chronic illness. It should also be noted that persons affected by HIV/AIDS, especially those who went through the 1980s and 1990s, can experience the same symptoms of trauma and isolation as people who are HIV-positive.
Social isolation is clearly a risk to emotional and physical health. Here are some steps you can take to protect yourself and increase your quality of life.
Don't wait for someone to reach out to you. Get up and out, knowing that you are not alone. Many other persons share similar feelings of shame, fear of discrimination and low self-worth. Find them in your community. Your presence will be a healing force for them and you. If physical mobility is a concern, remember that old-fashioned telephone calls are welcome, and look into what solutions can be provided by technology with forums and chatrooms.
Identify Your Specific Needs
People living with HIV need various types of support depending on their current circumstances, so it is important to get clear on what your needs are at any given time. During periods of high stress, anxiety or depression, emotional support is the most helpful. At other times, one might need tangible support such as help getting groceries or walking the dog. Finally, if there is a change in your health, it might be necessary to get informational support. What are the facts about a health problem, and what are your options? When seeking medical information, it's important to rely on carefully vetted sites such as TheBody.com to be certain that what you are reading is accurate.
Find a Buddy
In the early days of the epidemic when there were no systemic supports for people living with HIV, buddy systems developed that were enormously helpful. They involve checking in physically or by phone (now text, as well). A buddy might go to the doctor with you, help with a chore or just be a friendly listener on a difficult day. The highly evolved HIV bureaucracy of medical and social service programs plays an important role today, but sometimes being able to pick up the phone and speak with a friend is far easier and more soothing than reaching a case manager.
Practice Stress Management
Taking care of ourselves, including addressing pervasive feelings of shame, fear and low self-worth, is the foundation of healthy social connections. We need to believe that we deserve a high quality of life, and we must utilize tools to combat the stress resulting from feelings or beliefs that undermine us. Many stress-reduction techniques are free and simple, including deep breathing, progressive relaxation, walking in nature or playing with your dog or cat (or any other creature that gives you unconditional love). Avoiding a build-up of stress has great implications for keeping us healthy.
We need other people for our emotional and physical survival. HIV/AIDS can undermine these connections in any number of ways, but there are solutions, and they must begin with us. Reach out and get connected. We are waiting for you.