“The disease is manageable. What’s left is shame and stigma.”
HIV Then and Now
Protease Inhibitors entered the drug market in the mid 1990’s, changing the face of HIV, the virus that without treatment, eventually results in Acquired Immune Deficiency Syndrome (AIDS). Now considered a chronic disease, HIV infection, when approached with persistence and care, is entirely manageable from a medical perspective. Patients can now expect to live nearly as long as non-infected peers.
Medical Success Is Only Part of the Picture
Improvements in physiological response through effective chronic disease management is a landmark success for those living with HIV. Now that HIV positive individuals are living longer, it is easy to assume that there is nothing much left to the treatment picture. This is seriously misguided thinking.
HIV positive individuals experience significant mental health challenges, with mood disorders most commonly observed. While this is sometimes explained as an underlying endogenous problem, shame and stigma drives much of the clinical presentations seen in counseling offices. Today, we review frequently observed mental health complications, and broader psychosocial contributors.
Common Mental Health Complications
Managing the mental health complications associated with HIV as a chronic disease, is critical for longevity. Poor psychological health is a significant contributor to critical medication compliance for successful disease management. Frequent, ‘med vacations,’ has negative impact as pharmaceutical interventions for HIV, over time, become resistant to medications.
The common mental health complications associated with HIV are as follows:
Major Depressive Episode
Clinical depression is the most commonly observed mental health diagnosis among those living with HIV/AIDS. It affects approximately 22% of the HIV+ community. It is also overlooked due to need for focus on viral load and CD4 as markers of medication success. Individuals may also be contemplating end of life over their non-infected peers, a consideration that they may not be prepared for.
Generalized Anxiety Disorder
Anxiety arguably has the largest impact on life functioning for those infected with HIV. While research on depression has expanded over the years, evidence based practice recommendations for anxiety management is lacking. Anxiety vulnerability factors should be a focus in clinical research moving forward. Moreover, education for practitioners has the potential to produce leverage for launching empirical inquiry.
Those living with HIV represent a high proportion of the population diagnosed with substance use disorders. Moreover, ongoing substance use is a significant cause of concurrent morbidity and mortality. It is also associated with transmission. Services should approach HIV infection from a holistic perspective when developing strategies for working with substance misuse behavior. Addressing stigma is an important consideration in care.
Where the Problem Begins and How It Persists
- Body Shame: HIV Positive patients often describe feeling, ‘dirty,’ knowing they have a disease raging in their body. This often leads to feelings of worry, not knowing how the disease is changing them physiologically, and if anyone can see it.
- Social Isolation: Patients often describe changes in social behavior with both friends and family. Social isolation is a negative downward self-reinforcing spiral; the more you socially isolate, the harder it is to dig out.
- Excessive Worry: Watching your viral load decrease with subsequent increase in CD4 counts is encouraging. However, this does not outweigh the often observed excessive worry associated HIV infection. Worry appears before each round of quarterly blood draw and medication pick-up, and is easily generalized to other parts of your life.
- Medical Complications: HIV medications come with side effects that sometimes result in changes to regimen. Knowing that there is a very finite number of medications available on the market, leads to concern. Adherence to a regimen that works well is critical.
- Religious Judgment (Self or Other): Many individuals experience rejection from their faith community. This is especially problematic for the LGBT HIV+ community. Growing up in a church that later turns their back is devastating both socially and emotionally. Furthermore, if you subsequently condemn yourself, depression of often the cause.
- HIV as an Off Limits Conversation (Family): Some families are accepting. However, accepting the disease while refusing to talk about it openly, is the same as outright rejection. This is commonly observed in families that are at base experiencing their own judgement and fear concerning the disease. It is important to discuss the disease matter of fact, while providing support to each other for the implications of what it means to live with HIV.
- No HIV+ Community: If you live in a rural community, it is likely that there are few if any HIV+ individuals living around you. This contributes to a strong sense of social isolation related to positive status. Social media has helped immensely. However, a digital life is no substitution for in-person support.
Managing Disease from a Holistic Care Perspective
We firmly believe that treating HIV through a holistic (biopsychosocial – spiritual) chronic disease lens, offers optimal outcomes for happiness and longevity. Once you have stabilized on your medications (decrease viral load with increased CD4), consider engaging with a mental health professional. If you believe that the problem is primarily endogenous, you may also need to engage with psychiatry.
Finally, we are often at fault for not mentioning the importance of expressive spirituality. We must find our significance in the world, or be drowned in obscurity and lack of purpose. Reach out to either your church, or support group to engage this critical element of self care.