What was once a death sentence is now a chronic, manageable disease, but mental health issues such as depression still loom large for HIV-positive individuals when stigma, misinformation, and trauma remain unaddressed.
Approximately one-third of HIV-positive individuals experience a mood disorder or clinically significant depressive symptoms, and another 20% experience an anxiety disorder.1 These mental health struggles negatively affect quality of life while simultaneously contributing to poor medication adherence for antiretroviral therapy and stressing the immune system. This can lead to an increased viral load, reduced CD4 counts, and worse health outcomes.1,2
Despite the importance of robust mental health support for the HIV-positive community, many individuals struggle to find appropriate care for their unique situations and experiences.
Diagnosis: Then and Now
When Donald Hughes, a hairdresser and community activist living with HIV, got his diagnosis, it was 1986. Access to antiretroviral therapy was still a few years off, and Hughes felt “there was no way out.”
A year after his diagnosis, Hughes began his journey to sobriety and recovery. He started attending support groups, many of which looked to alternative medicine approaches for treating his HIV, such as taking Echinacea supplements and drinking aloe vera juice, and some of his colleagues even underwent urine therapy. Throughout his experience, there was a strong undercurrent of fear, isolation, and loneliness. “I kept looking around in support group meetings, thinking, it’s about time I got sick,” Hughes said.
An HIV diagnosis in the late 1980s was full of unknowns that taxed a person’s mental health. No one knew how long they would stay healthy. People hid their diagnosis from insurance companies, afraid that they would lose coverage. As a hairstylist, Hughes was often called into the hospital to do haircuts for individuals in hospice care or who were homebound. He found himself personally cleaning and caring for HIV-positive patients because they were neglected by hospital support staff.
Although the options and health outcomes after diagnosis have improved dramatically in the last 30 years, issues of stigma still remain for many people. HIV-positive people struggle with disclosing their status to partners and family members, and report harmful treatment when they do so. Isolation, feelings of worthlessness, and low self-esteem plague individuals dealing with this fallout from family and friends.3 According to research published in 2009, HIV-positive individuals who encountered high levels of stigma were also 4 times more likely to report poor access to healthcare.4
Because HIV is associated with homosexuality, intravenous drug use, and sex work, all of which are stigmatized practices, newly diagnosed individuals may experience internalized shame and social discrimination from their perceived connection to these communities. Suicide accounts for 2% of deaths in people with HIV, at twice the rate of the general population, and 40% of those suicides occur in the first year after diagnosis, when coping is the hardest.5
Many HIV-positive individuals also struggle to access supplementary services they need to live healthy lives, such as Ryan White funding for their medications, housing assistance, or drug and alcohol rehabilitation.
Adam Bloom, a DC-based psychotherapist specializing in the LGBT population, notes that “HIV is not a death sentence, but it can still feel that way.” Mental health professionals supporting patients living with HIV need to make space for their patients to process the emotional effect of their diagnosis, but not to make assumptions about what it means to them.
Bloom, who is also HIV-positive, was diagnosed at age 23 by a healthcare provider who immediately asked, “Do I need to link you to a suicide hotline?” Bloom had not expressed any suicidal ideation and felt that assumption poisoned the relationship with his provider. He replied, “No, but I think that I need a new doctor!”
Bloom stresses that providers need to offer the facts about HIV and then be a witness for that person’s emotional process. He says, “I am a big proponent of the WAIT method: Why Am I Talking?” Rather than guiding a patient’s healing in one specific direction, Bloom encourages therapists to spend most of the time listening and then to sit with whatever emotions comes up for the patient.
His approach bears out in the clinical research. A meta-analysis of more than 60 guided psychosocial interventions shows a small positive effect from mental health interventions for people living with HIV,1 but that effect is not predicated on the kind of intervention technique used.6
Teaching cognitive behavioral therapy techniques, relaxation, stress management, or motivational interviewing did not affect treatment effectiveness. What did matter was the quality of the relationship between the patient and the therapist who provided the intervention, with trained psychotherapists eliciting better results, and what the duration of treatment was, with longer interventions faring better.6
This makes sense to Bloom. He notes that HIV-positive individuals could be dealing with multiple stressors, such as being LGBT, homeless, or using drugs, and that each unique person will have their own needs from psychotherapy.
Assessing the Connection Between HIV and Depression
As discussed, depression can stem from the psychological effects of an HIV diagnosis. Feelings of loss, worthlessness, and fear can lead to long-term mood disorders if support is not available.
However, physiological impacts of the disease can also cause depressive symptoms. For example, efavirenz, an active ingredient in several HIV medications, has been known to cause a variety of psychological symptoms, including depression.7 In HIV-positive individuals with severely compromised immune systems, opportunistic infections such as toxoplasmosis and cryptosporidiosis can mimic or induce depression symptoms.8
Bloom notes that HIV puts the body “in a state of constant inflammation,” which takes a toll. “The human body is an integrated system, so when the immune system is under attack, it affects how our brains function.”
This creates a deadly cycle when depression caused by HIV infection interferes with a patient’s medication adherence. Depression can affect a person’s executive functioning capacity, making it difficult to remember to take a daily medication regimen.9 Not taking medication can also serve as a form of functional denial about their illness: Bloom explains, “Clients think, ‘If I don’t take medication, it isn’t happening to me.'”
Robust evidence also suggests that chronic depression is associated with progressively worsening HIV outcomes and a higher likelihood of AIDS-related mortality, even when antiretroviral therapy is accessible.10 The link between the health of our brains and the rest of our body makes the role of a mental health clinician all the more crucial for the survival of HIV-positive patients.
Putting the Social Back in Biopsychosocial
The well-being of HIV-positive individuals is incumbent on the strength of interlocking webs of physical, emotional, and social support. A patient who lacks stable housing will almost certainly experience depression related to the stress of homelessness, and will probably have difficulty with medication adherence. A patient living in a rural area with limited employment prospects may remain reliant on family members who treat them poorly, increasing their mental health issues.
For this reason, Bloom stresses the importance of monthly care coordination meetings, in which physicians, lawyers, social workers, therapists, and other concerned parties can work together to support patients with medically and socially complex lives.
Together with a committed care team, patients can identify what puzzle pieces are missing that keeps them from living their fullest, healthiest life. As a Community Health Worker for the DC-based harm reduction organization, HIPS, Randy Kier explains, “[m]any consumers tell me that all they want is someone to listen to them, or talk to. A community health worker listens to the consumer and finds the motivation to move forward with life.”
In these situations, mental health professionals are a support pillar in their patient’s social world, as well as a sounding board for their healing process. Simply providing a compassionate listening ear can be as valuable as any research-validated structured intervention.
Thirty years after his initial diagnosis, Donald Hughes reflects how his views on HIV have changed: “I am as sick as my secrets. I can’t get help unless I’m willing to be open. I can go and express my feelings about this disease without being afraid of being discovered.” Mental health providers are a crucial link in the healing chain, making space for patients like Donald to speak, to process, and to move forward with their lives.
- van der Heijden I, Abrahams N, Sinclair D. Psychosocial group interventions to improve psychological well-being in adults living with HIV [published online March 14, 2017]. Cochrane Database Syst Rev. doi: 10.1002/14651858.CD010806.pub2
- Gonzalez JS, Batchelder AW, Psaros C, Safren SA. Depression and HIV/AIDS treatment nonadherence: a review and meta-analysis. J Acquir Immune Defic Syndr. 2011;58(2):181-187.
- HIV/AIDS and Mental Health. National Institute of Mental Health. https://www.nimh.nih.gov/health/topics/hiv-aids/index.shtml. Updated November 2016. Accessed May 17, 2018.
- Sayles J, Wong MD, Kinsler JJ, Martins D, Cunningham WE, et al. http:The association of stigma with self-reported access to medical care and antiretroviral therapy adherence in persons living with HIV/AIDS. J Gen Intern Med. 2009;24(10):1101-1108.
- Pebody, R. Suicide accounts for 2% of deaths in people with HIV, twice the rate of the general population. Aidsmap.com. http://www.aidsmap.com/Suicide-accounts-for-2-of-deaths-in-people-with-HIV-twice-the-rate-of-the-general-population/page/3130052/. Updated April 6, 2017. Accessed May 17, 2018.
- van Luenen S, Garnefski N, Spinhoven P, Spaan P, Dusseldorp E, Kraaij V. The benefits of psychosocial interventions for mental health in people living with HIV: a systematic review and meta-analysis. AIDS Behav. 2018;22(1):9-42.
- Living with HIV and Depression. POZ. https://www.poz.com/basics/hiv-basics/hiv-depression. Updated February 14, 2016. Accessed May 1, 2018.
- Jeevani T. Symptoms of AIDS related opportunistic infections and their effects on human body. J AIDS Clinic Res. 2011;2:132.
- Biringer E, Lundervold A, Stordal K, Egeland J, Bottlender R, Lund A. Executive function improvement upon remission of recurrent unipolar depression. Eur Arch Psychiatry Clin Neurosci. 2005;255(6):373-380.
- Leserman J. Role of depression, stress, and trauma in HIV disease progression. Psychosom Med. 2008;70(5):539-545.