Not another damn stigma blog!
Isolation can literally kill a person. There is power in the realization that it’s time to shift our focus from trying to out-educate ignorance and hate and instead focus on lifting up the individuals bearing the costs of other’s intolerances.
Stigma. Stigma. Stigma. These days, you can't go online and look at anything about HIV without seeing the term "stigma". Many people, including myself and a host of others smarter than me, correctly point out that stigma is a key reason for ART non-adherence. In simpler terms, too many people living with HIV either don't get in care or don't take their meds because their communities shun them because they have HIV. For these people, the cost of not taking care of their HIV, up to and including death in cases, is less than the cost of being excluded from their family, friends, and community. I encourage you to go back and re-read that last sentence. We are fundamentally social primates and we are hard-wired to seek relationships and avoid isolation.
The history of shunning people with non-heterosexual, non-monogamous sexual preferences long predates the arrival of HIV in this country. Sadly, homosexuality has been shunned by most societies for centuries. It would be nice to think that, in the year 2022, we could get past any kind of sexual shaming and put our energies to solving at least some of the intractable social ills that serve to crush the poor and communities of color everywhere they turn. However, based on my last several months of clinical service to PLWH in rural TN, I can clearly state that stigma is alive and well in TN.
Stigma is the correct answer to the question - why do people not engage or stay in care? But I have to ask another question - how does knowing that stigma keeps people out of HIV care help get people into HIV care? Because for me, getting up every day and fighting this damn virus is about loving and empowering people into care. From my perspective, it's time that we realize that stigma is external pressure, applied from outside a person to harm them. Stigma is not an infection that must be removed from inside a person. Stigma is done to a person. Stigma and the ignorance on which it feeds is much like the weather - we can be aware of it, even predict it, but we cannot do much to change it.
So, what to do in the case of HIV? Hide under our umbrellas and wait for the storms to pass? No, not in the least. I am arguing that the best way to address HIV stigma is by increasing the self-efficacy of PLWH so that they are less harmed by the external forces of stigma. To go back to the weather analogy, just because we can't make it rain when and where we need doesn't mean that we all give up on our lawns. Not at all. We don't give up. We adapt. We learn about new grasses and other plantings for our yards. Sometimes, we rip up an old lawn and re-decorate with new plantings and ground cover. If possible, we water our lawns. In short, we focus on energies on the areas where we have control instead of trying to change things outside of our ability to control. As my friend and inspiration for this post said to me this morning over coffee, "haters gonna hate." Goodness, do I wish I could change that. And, maybe one person at at time, hate and ignorance can be worn down. But what about the people who are suffering now because of this stigma? What can we do for them NOW?
What we can do is exactly the same kind of thing that we do for our lawns, with one huge caveat. Our lawns are under our control and we do with them what we will. Other humans must be recognized for their innate strengths and the full human agency to which they are entitled. In other words, we have to get out of the way, stop telling people what to do, and empower them to do for themselves. We can encourage people oppressed by stigma to adapt, to consider new ways of being, to find new ways to nourish themselves so that they aren't so easily at the whims of those seeking to stigmatize them. It's so important to realize that a person or group attempting to stigmatize you only has to power to do so when you consent to being stigmatized. When you don't consent, those people may still be ugly, but that's on them - it's not under your skin because you have adapted new skin that is beautiful and protective.
Is this easy? No. Can this be done? Yes. We did this in the PATHways Program at the Vanderbilt Comprehensive Care Clinic. How? We did this by creating an intentional, loving community and inviting others to join us. Our patients were only with us a few of the 168 hours in a given week, but that brief exposure (and knowing we were always within reach via cell phone) gave program participants enough power to not only survive, but even thrive, until their next visit.
I detest stigma. I detest ignorance, especially when enshrined into law or policy. I want nothing more or less than for everyone living with HIV to be free to live the full and beautiful lives to which they are innately entitled. Tragically, we don't get to live in such a world. Hate and ignorance are real and powerful forces, and we are at a time in the history of our country when it seems that hate and ignorance are rewarded, not shamed.
None of us can individually change our broken culture. None of us can give up on our marginalized friends, family, and patients. None of us can abandon our lawns because we can't control the weather. There is a way forward. One hurting, isolated, and abandoned person at a time. I've been part of a remarkable team that has done just this. It can be done again. All we need is for you, dear reader, to join us. Let's come together and share some of our power to empower others to better withstand hate and ignorance. Let's come together.
