Certain types of doctor appointments can be more stressful by nature. Maybe it’s because you don’t seek care regularly or there is family history or mistrust involved. Going to the OB-GYN stresses me. There are a number of reasons, but at its base, the idea of exposing my hoo-ha to a stranger brings anxiety. Your specific type of appointment unease may vary, but many of us have had that trigger, if not often, at least once. Sometimes anxiety is the unknown, such as not knowing what the outcome of tests may be. All too often, it is the knowing. Knowing you won’t be respected, frustration about the way they will talk to you (or won’t talk to you), the lack of answers. Feeling unseen or other microaggressions that at times may make you decide to just not go. Consequently, missing appointments may cause you more stress.
Whether you call them clinicians or providers, practitioners, researchers, scientists and the other staff that do the work of medicine—whatever the designation—health care providers need to do better by the people they serve. This is not limited to HIV providers. Appointments to non-HIV clinicians can also offer a unique kind of stress to people. They, we—I’ll include nurses, because I am one and therefore part of “the profession”—are stumbling if not outright falling in simple but critical ways to really serve and impact the lives of people living with HIV. That is not to say that there are not amazing care providers. There are! I’ve met them, listened to them and learned from them. Yet, I listen to peoples’ experiences, I hear their stories and know there is a disconnect. I have firsthand experience—the casual disregard and the impatient behavior that comes from being entrenched in the burnout of having “seen it” too many times, or the painful ignorance of not knowing about HIV and not caring enough to learn.
One of the worst experiences I had at a clinician’s office came very early on in my HIV diagnosis, at a GYN office, which further imprinted the trauma in my head. I had to course correct this physician four times away from insisting on using the word AIDS, his asking me personal questions about the why and how I acquired HIV that had nothing to do with my visit and him telling me that I was his “first AIDS patient.” He then went overboard taking precautions for my exam by wearing two gowns, goggles, booties and a head cap. For a simple Pap smear. This was 2013, and I wish I was making this up. His use of language, his casual indifference toward my feelings, the line of questions, the ignorance, and not recognizing the difference medically and emotionally between AIDS and HIV are what I am talking about. I have another example of an instructor in nursing school; I’ll spare you the details, but it is one of the reasons I am the nurse I am today. I know a hundred stories, but most are not mine to tell.
Medical professionals are supposed to be the bridge between illness and health. The problem we face starts when clinicians refuse to see us as more than a disease. It continues when their academic knowledge of viruses causes them to forget there is a person living with the virus. The doctor I’m talking about didn’t use acquired. That’s my word. He said infected. “How did I get infected?” Imagine yourself infected with something, and see how the word feels in your brain and tastes on your tongue. Now imagine it attached to you every time you visit the doctor. Not just in doctor offices, but in articles you read and advertisements you see. By scientists who also refer to you as an “HIV-infected study subject.” Envision yourself being referred to as a “risk population.” Now, replace these things with your name and see it in those same spaces. Year after year as part of your daily life. It’s not just the words, it’s the casual disregard from clinicians who don’t practice in HIV, who therefore don’t bother to learn about it. They may sit on their phone or computer and look up the HIV basics they haven’t seen since med school, right in front you. How does that inspire confidence in the bridge? Not to mention the nonchalant discussion of your diagnosis by front office staff in front of the whole waiting room when they are tasked to respect confidentiality but don’t.
HIV is stigmatized, criminalized and misunderstood for both what it was and what it is now. What it has always been is a human condition. Clinicians must learn to connect to humans and not the virus. My favorite affirmation is “when you cannot find the light, be the light.” We need them to be the light.
Bridgette Picou, lVN, ACLPN, is a licensed vocational and certified AIDS Care Nurse in Palm Springs, California. She works for The Well Project-HIV and Women as their stakeholder liaison. Bridgette is the president-elect of the Greater Palm Springs Chapter of ANAC (the Association of Nurses in AIDS Care), and a sitting member of the board of directors for HIV & Aging Research Project-Palm Springs (HARP-PS). Bridgette’s goal is to remind people that there are lives being lived behind a three-or four-letter acronym.