Reflections from an HIV Advocate's Journey: LaWanda N. Wilkerson

By: LaWanda N. Wilkerson, Advocate

My journey as an HIV advocate started in April 2015, when I received a telephone message from my doctor’s office asking me to call them back. Thinking nothing about the message because I had been to the doctor earlier that week, I believed that they had call in a prescription for another sinus infection (I could not have been so wrong in my life). I called the doctor's office and the nurse put me on hold to get the doctor. No big deal, right?

The doctor gets on the phone and says, “Miss Wilkerson, your test came back and you are HIV positive." In that moment, it felt like the air in my lungs was released from me. As the doctor continued to talk in a very cold voice without any compassion, letting me know that they had referred me to a clinic that specialized in infectious diseases and then hung up the phone. Still sitting in my rocking chair in my classroom for what seemed like hours but in reality only had been fifteen minutes (yes, you guest it I was still at work), I went through several emotions. Anger! Guilt! Pain!

The biggest thing for me was not knowing if I would live or die. How would this diagnosis impact my life? No compassion or comfort was given to me on the phone call with the doctor, so I was left to merely speculate.

So many questions raced through my head. How do I tell my family? How do I tell my daughter that her mom is HIV-positive? How could I have let this happen?

My appointment at Warren Vance Community went better than I expected, mostly because I received the compassion and the reassurance that everything would be okay. I still had my whole life ahead of me! Not only did I receive excellent care, but I was gifted a second family from fellow advocates.

Later that year, my case manager at the clinic helped me get a scholarship to go to AIDS WATCH.  Little did I know that this conference would connect me with fellow compassionate advocates right here in North Carolina, and it would jumpstart my advocacy journey. It connected me with Wanda Brendle Moss (my guardian angel and mentor). Wanda was the hand that touched my back and said, "You are safe here and it's okay to share your story about finding out my status over the telephone instead of begin called into the doctor’s office."

Lee Storrow with the North Carolina AIDS Action Network (NCAAN) also encouraged me to share my story during our legislative visits. As I sat in Senator Richard Burr’s office, I shared my story with complete strangers and I once again felt that anger, guilt, and pain. Yet by sharing my story it melted away those negative feelings and it empowered me not to be a victim. It was my first step to use my voice, affecting change on how people...especially women living with HIV...are viewed in the community.

After AIDS WATCH, Wanda took me under her wings as my advocacy mentor and she helped me to stop being a victim. My first mission as a new advocate was to write a blog about my experience at AIDS WATCH for NCAAN.

Next, Wanda connected me with the The Well Project as a blogger for their “A Girl Like Me” and as an independent contractor for their Building With Hope project. The Well Project has helped me to help others like me by sharing my story, including how I was told about my status, as well as my day-to-day struggles.

In 2016, I was introduced to the ADAP Advocacy Association's Annual AIDS Drug Assistance Program Conference, which I attended on a scholarship. I was honored to have attended this amazing advocacy event in Washington, DC each of the following two years in 2017 and 2018. And now, I've been asked by the organization to serve as a co-vice-chair of their ADAP Consumer Advisory Council.

Now, I am a long way from begin a victim because I use my voice to represent others who cannot speak publicly about their HIV-positive status. I serve on the board at the health center where I receive care as a way to give back to the people who have helped me. I have learned that my imperfections are what makes me an advocate. While I was a very quiet and shy person, I have learned how to open up to others and share my story and my experiences. It reassures others like me to know that they are not alone.

In my advocacy work, I have become a more confident woman. I found my voice to help make change happen in my community. I've learned to educate people about HIV/AIDS, but also about stigma, criminalization, healthcare, and our life-saving medication. I still consider myself a newbie, but my passion for learning is still helping me to advocate for others like me.

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.