One of the most powerful things a patient said to me was, “Just because I hear you doesn’t mean I understand what you’re saying.” His regimen was changing because he had developed some drug resistance, and I was doing the nurse education part of the visit right before discharge when we reiterate what the doctor said and ask if there are questions. After having discharged patients a hundred gazillion times, I could tell by the look on his face that something wasn’t clicking. His response also resonated with me because I could remember leaving appointments with doctors early on in my diagnosis, and scouring the internet to make sense of some of the things I was told. I didn’t have a nurse to follow up and explain what I missed, or to get my doctor back in for five more minutes to help it click.
It took a while before I was comfortable enough to ask clarifying questions of my provider. For me, I was still trying to absorb all the changes and information coming at me hard and fast. I wasn’t crazy about my first provider because I could tell he wasn’t crazy about me, so those conversations were waaaayy more brief than they should have been. I can say the more I learned, the looser the knot of uncertainty in my stomach was.
‘...no matter what your approach is—how much or how little you choose to learn about the life cycle of the virus, medication innovation, treatment options, or advocacy—remember you matter. Remember your questions have weight and relevance. Ask them. Repeatedly until you understand.’
People of all types, backgrounds, education level, maturity, and socio-economic history get HIV. People like me, or you. It’s crucial we get comfortable with being uncomfortable, in order to ensure we begin to thrive as early on in our new life process as we can. I purposely choose the phrasing of “new life process” as opposed to “disease process” because your life is yours, it doesn’t belong to HIV. There are parts and pieces about HIV that can be overwhelming, especially for the newly diagnosed. I have cared for patients who don’t care to learn anything but the basics because it’s easier to not give it a lot of energy—they take their meds, do their labs, and go about their business. They have a trusting patient/provider relationship with their clinician, and trust them to have the knowledge piece down. Others learn all the ins and outs and nuances because they feel safer and better informed. Neither is a wrong approach. Like I said, it’s your life, not HIV’s.
My wish is that no matter what your approach is—how much or how little you choose to learn about the life cycle of the virus, medication innovation, treatment options, or advocacy—remember you matter. Remember your questions have weight and relevance. Ask them. Repeatedly until you understand. Discuss your fears. You aren’t alone. Reach out for help if you need it. It’s not a weakness. On the contrary, it’s wise. HIV has the potential to upset the balance of everything in your life—your health, your relationships, your mental well-being. Because HIV affects so many lives, the likelihood that someone has been where you are and understands how you feel is greater than not. The help is there if you want it. You most certainly deserve it.
Another powerful thing I learned from patients is that sometimes people “nurse the nurse” without even knowing they are doing it. Something they say, do, or make me feel, makes a “click.” Your questions, fears, epiphanies, and triumphs could be someone else’s click. Remember that.
Bridgette Picou is a licensed vocational nurse in Palm Springs, California. She uses her voice to speak for others as a member of the Board of Directors for HARP-PS, HIV +Aging Research Project, and as a Community Advisory Board Member for The Well Project-HIV and Women. She is also an active HIV blogger and member of ANAC, the Association of Nurses in AIDS Care, Greater Palm Springs Chapter. Finding a voice in advocacy and activism is a natural progression, since she feels that every time she fights for someone else, she affirms her own life.