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Being diagnosed with HIV is an emotional experience for many. Hearing that you have this chronic—but manageable—viral infection can bring on a number of emotional responses. Fear. Anger. Guilt. Denial. Anxiety. Distress. Uncertainty about the future of your health, your relationships, your quality of life. All of these reactions, and many others, are normal.
With the vast improvements in treatment, HIV has become a chronic manageable condition. Chronic means there is no cure. Manageable means that there are effective medications that can control the disease and allow people who have HIV to enjoy a high quality of life and live for many years. Managing HIV is sometimes compared to managing diabetes, another chronic condition.
Successfully managing HIV requires taking medications daily and following a healthy lifestyle (eating well, staying active, practicing safe sex, and avoiding unhealthy habits such as smoking, alcohol, and drugs).
It also involves getting the right emotional support, and taking care of your mental health.
Support from your healthcare provider
The most important thing a person with HIV can do for their health is to work with their healthcare provider to get on treatment, and adhere to treatment as directed. Your healthcare provider can also be a source of support for managing the mental and emotional struggles of living with HIV.
How you are feeling emotionally should be a part of your discussion. Changes in mood and emotion, sleep patterns, eating habits and appetite, and feeling fatigued can be symptoms of depression, but can also be side effects of treatment or interactions between HIV treatment and other medications you are taking. Whatever the cause, these need to be addressed by a healthcare provider. Mental health is not only important to your quality of life, it often impacts how well people adhere to treatment, as well as other important factors like diet, exercise, and abstaining from unhealthy habits.
Support from therapists and counselors
Getting the support you need many mean adding another type of healthcare provider to your team. Some patients may benefit from working with a provider who focuses on mental health, such as a psychologist or psychiatrist. Others may want to work with a counselor or social worker that focuses specifically on HIV and how it impacts a person’s life.
Support from family and friends
Support from loved ones can make a big difference to a person managing a chronic health condition like HIV, but it can present its own challenges. Just as patients react differently to a diagnosis, friends and family react differently. Take time to consider how you will share your diagnosis, what questions your friends and family will have about the disease and about treatment. Remember that while there have been amazing advances in treatment as well as education and awareness about HIV, there is still a stigma around the condition. Also consider what type of support you need from your loved ones—oftentimes, people will want to help, but may not know how.
Support from others with HIV
Sometimes, the best thing is to be able to talk to other people who have been there. Support groups offer the chance to meet people who know what it’s like to be diagnosed with HIV, begin treatment for HIV, and live with HIV. There are many support groups available. To find one, start with your healthcare provider, or the staff at your hospital or healthcare center, who may be able to direct you to a group. There are also support groups that meet online, utilizing social media, forums, direct messaging, and video chat.
Medically reviewed in July 2019
