Disclaimer: The views and opinions expressed in this piece are the author’s and do not necessarily represent the position of Positive Women’s Network – USA.
October 22, 2019
by Connie Shearer
October 23, 2019, is National Day to End Violence against Women Living with HIV.
This year was a rough one for me, and I thought it was time to discuss violence through the lens of a client.
A case manager is in many cases, the first point of contact for every person living with HIV who is searching for services and resources. In some cases, those case managers become the barriers that cause long-term survivors to fall out of care and why newly diagnosed people do not get into care.
Why: Trauma, and the need for trauma-informed healthcare professionals.
Every single person reaching out seeking services has been traumatized in some way, and now they are putting themselves at the mercy of one person. How that person reacts to them and their behavior will decide if they stay in care or not.
How: In some larger cities, organizations are writing policies with language that protects the employee while they put the client at risk. Staff is not trained in trauma-informed care.
Sadly, some of us who have worked within agencies that serve marginalized communities hear people that make high five or six-figure salaries say that they believe that clients lie to get services or embellish the truth. At the same time, they are writing grants using language that supposedly elevates and enhances the lives of these same untrustworthy and difficult clients, myself included, who live on five or less figures a year.
Here is my personal story as it relates to this. A few months ago, I received a call while I was at work and had to step outside because it was my pharmacy calling. They told me when they ran my prescriptions, they found out my Ryan White funding lapsed. Why did I allow my Ryan White to lapse? I didn’t! I left two messages that went unanswered until I called out of meds, angry, confused, and experiencing those “words” case managers and group facilitators get to read through and ignore.
One of my sisters called me and brought me her extra meds, so I was fine until I was able to re-certify. Without that case manager, the client can’t access services. I was able to switch to a new agency because I lived in a large city where there is more than one choice, or I would not have gotten back into care. I would have chosen to stay out of care until I was able to move. Thankfully, I found a wonderful case manager until I moved, and I have another great case manager where I live now.
My suggestion for a possible fix: I would like the option to re-certify online through the same secure portal they use to link case managers now. I think this would help ensure all clients have zero barriers to accessing care. Those clients who are not okay with using the online portal could still go into the office.
Any long-term survivor of HIV that deals with adherence issues knows how hard it is to get to 100% adherence. I have been diagnosed with HIV for 23 years, and I live with some serious long-term adherence issues. I am resistant to a few of the medications and do not need to become resistant to anymore.
When agencies write policies that allow case managers to put a client’s adherence at risk and create a situation where we could possibly develop a resistance to our medication, this is violence any way you look at it. I am not acting entitled to anything here. I am expecting professionalism and for agencies to fill their grant requirements by serving the communities that need them, not only the community members they like.
When the dust settles, we the client/advocate are talked about with words like: “crazy,” “emotional,” “angry,” “I can’t work with her and her personality.”
What I need is for those around me to understand trauma and its varying degrees. If they are truly working to end the epidemic, and if they are working to get that 50% of people living with HIV who are not in care back in care and maintaining viral suppression, they will be trained in trauma-informed care.
I live with complex trauma and was told that the characteristics of dissociation, rage, isolation, sense of foreshortened future, and psychological numbing, that is causing me to act in certain ways, came from the prolonged exposure to extreme violence and bullying I have experienced specifically because of my diagnosis.
I began attending webinars and in-person trainings with Positive Women’s Network and The Well Project. I began attending monthly call in meetings with my sisters, who have explained and shown me firsthand that the only way we get through those hard times is to love harder on that person who is struggling. Love them when they are in the middle of living through those words our case managers get to toss around and get to choose to turn us away because we are “difficult to reach” and “angry” or “living with mental illness”, even though those are some of the keywords that help them win grants. Being part of a sisterhood has taught me to give privacy when it is needed and love each other even when it isn’t asked for and especially when it isn’t easy. Even when you’re mad, love each other.
MAD LOVE – to harbor more than an average or normal fondness of or for something. a way to say you really like something – I have MAD LOVE for my tribe!