Shakedowns. Witchhunts. Shocking Diagnosis. Debauchery. Devastating. Ex-lovers’ horror. Hysteria. Each of these powerful words screamed from the headlines when Charlie Sheen disclosed his HIV status. They unfortunately prove that, for many Americans, an understanding of HIV and AIDS has not progressed beyond the days when a dying Rock Hudson was dogged by reporters. HIV is still portrayed as a terrifying epidemic and people living with the virus are viewed as a threat to public health.
This story is, in many ways, an opportunity to correct mistaken beliefs about the virus. For a person living with HIV, however, these hyperbolic headlines trigger old, familiar feelings that have so often accompanied HIV: fear, stigma and shame. Misconceptions fuel this stigma, which directly impacts the lives of people living with HIV and those who love them. Many of us (I was diagnosed with HIV in 1988) have devoted considerable effort to overcome these painful emotions, and with good reason. Unlike the epidemic of the 1980s and 1990s, we have a far greater understanding of the science of HIV, as well as effective prevention tools and powerful medications. Despite these advances, for someone living with HIV fear, shame and stigma are far more lethal than the virus.
How does stigma impact us? Fear of discovery still prevents people from seeking HIV testing or, if positive, disclosing their status. Stigma fuels rejection, hatred, abandonment and even violence, and the movement to criminalize HIV is growing. For those of us living with HIV, this oppressive whirlwind contributes to harmful emotions that are detrimental to our health. Depression, anxiety, trauma and the urge to numb uncomfortable emotions through addictive behaviors can all be triggered. This is especially precarious as the holidays approach.
It is essential for people living with HIV to proactively manage the feelings that arise when such stigma flares. Here are five things I suggest:
1. Make this a teachable moment: Stigma and discrimination are fueled by ignorance and fear. Be certain that you are current on the science of HIV and don’t be shy about informing your friends and acquaintances. Remind them that HIV cannot be transmitted by sharing household objects and that young people diagnosed with HIV today (and who take their meds) will have a nearly normal lifespan. There is a very low risk that people with a undetectable viral load can pass on the HIV virus to their partners, and numerous studies show that PrEP (pre-exposure prophylaxis) is highly effective at preventing transmission of the virus. I believe the most powerful weapon against stigma is disclosure of one’s HIV status. This is, of course, a very personal decision and it must feel appropriate and safe. When people know that someone they love or respect is HIV-positive, however, stereotypes and stigma quickly dissolve.
2. Connect with others: Isolation is common among those living with HIV. This may be due to physical fatigue or other conditions, or it can be a symptom of shame and depression. Many of my HIV-positive clients describe themselves as “damaged goods.†They find themselves stigmatized by a viral divide between positive and negative worlds. Some feel hopeless and others are anxious or depressed, but each of these feelings causes withdrawal and disengagement. It is essential to fight this urge and reach out for social connection, be it a friend, a family member, a pastor or a support group. I believe that being socially connected is the single most important factor for emotional resilience and for the best health outcomes.
3. Practice self-care: Taking care of oneself is critical anytime, but it is essential during stressful periods. Getting adequate sleep, avoiding excessive food or alcohol, taking time for quiet reflection and surrounding yourself with people that “feed†you emotionally are all important aspects of self-care. Simple actions such as creating a short gratitude list are wonderful antidotes for negative emotions. Each of us develops a unique formula to maintain balance in our lives. I find that connecting with nature, playing with my dogs or spending a quiet evening at home with my partner are all restorative.
4. Seek professional guidance if needed: There are times when it is necessary to get professional assistance. Rates of depression can exceed 50 percent among people living with HIV, and are twice as high in women with HIV. Rates for anxiety can exceed 40 percent for people living with HIV. When discomfort reaches a certain level, or if there is just a general feeling of malaise, it is helpful to check in with a mental health provider who can offer effective tools and treatments (usually a combination of medication and talk therapy). It is important to find someone who is knowledgeable about HIV. You should not need to educate your therapist about your experience or your condition. Ask your support network for referrals.
5. Be gentle with yourself: It is natural to internalize the negative messages about HIV that are screaming at us from the headlines, particularly if they resonate with some deep-seated fear that we already have. This results in shame, a crippling belief that we are somehow flawed. The antidote for shame is compassion for oneself. Treat yourself kindly and understand that HIV is a medical concern, not a moral one. Guide yourself toward a gentle acceptance of who you are, the gifts you bring and your importance in the world.
Stigma can be more harmful than HIV itself. When outbursts challenge those of us living with the virus we must reclaim our strength and resilience, not only for ourselves but for those still struggling under the weight of stigma.