Reflections from an HIV Advocate's Journey: Chunnika L. Hodges

By: Chunnika L. Hodges, Michigan State Lead, Positive Women's Network-USA (PWN)

As I reflect on my journey as an advocate living with HIV, I would say that it has its ups and downs. At some point, I stepped back from the scene for a while. As much knowledge of HIV & experience with PLWH (familial) as I had at the time, I was still unaware of the risk (I was in a monogamous relationship. I say that because messaging surrounding women and HIV, let alone Black women and HIV, was not discussed or seen in 2005! Receiving a dual diagnosis of pregnancy and HIV at the age of 25, I was unprepared for the next steps, asking myself, was I going to terminate my pregnancy or go through this pregnancy? Mainly because of the way the medical professional delivered the news of me now having HIV and being pregnant. Upon entering the room, the doctor was like (after looking at the file), "Ms. Hodges, you're HIV positive and pregnant," and walked out of the door 90 seconds after delivering life-altering news. 

That day in September 2005, six-eight weeks before my 25th birthday, changed my life like I never thought it would. Shortly after giving birth to my daughter, who is now 16 years old and HIV negative (because of the HAART regimen available to prevent transmission during & after the birthing process), I started out doing speaking engagements; from there, it led to me connecting to a group of women just like me "Pregnant and living with HIV." Being a part of this group opened so many doors for me, mainly because I was the only young black woman living openly about her HIV status. I was not blasting from the stands; however, when teachable moments came up, I took advantage of the moment to educate and create awareness of the complexities of acquiring HIV. For instance, even though you may think that you are in a monogamous relationship, your partner may not be in that same relationship. My favorite statement to women when I talk is, "Get Tested…. You do not carry your partner's penis in your purse like it's the American Express Card; You do leave home without it," Meaning have those hard conversations, get tested together (if the opportunity arises), but be more proactive about your Sexual health care needs. Growing up with self-esteem issues, daddy issues, body image, etc., I was a hot mess internally and, therefore, externally, led to relationships that were what we now call unhealthy relationships. From that moment, moving forward, I became involved in any way I could, but not realizing the cost to myself because of the lack of knowing who I was as a Black woman. For a while, I was going through the motions of feelings of unworthy, nasty, low self-esteem, mentally & emotionally not good! I realized I had become a token in this advocacy journey. 

AIDS Walk, 2017

I say that because, before my diagnosis, I was not the confident woman people see today! As I write this blog to reflect, I have realized that my diagnosis has been a curse and a blessing at the same time. If that make sense? Diagnosis of HIV has given me the confidence &purpose to live out loud and unapologetically; also, because I am a unique case of a WLWH, the blessing is that I have not been on medication; only until eight weeks after giving birth to my daughter. The "curse" of this diagnosis is finding meaningful relationships (with self and others). As I reflect, I remember being in spaces where I would share my status and what that means and looks like for me. Some were intrigued by my uniqueness of living with HIV. While some displayed other types of expressions and comments,  like "she ain't got it." Words like this came from my "peers." Hurt like hell, but I never let those people see sweat. However, I internalized those feelings and started feeling like I did not belong in the journey of advocating for PLWH; why you may ask? It was for a few reasons: my story was not like the others I encountered when sharing their story. Not taking medicine, me being open about my status since being diagnosed. Earlier I mentioned that losing myself in this journey came as a cost to me. My identity was wraparound "a black woman living with HIV." But not knowing who I was before my diagnosis was the key to finding myself again. So I took a break from the journey to find out who I was and my purpose on this journey. After taking a hiatus, I came back knowing my purpose of educating about research on HIV and the importance of becoming involved and providing my experience as a black woman engaged in research studies. Some would say, why research? Earlier I spoke about my diagnosis being a curse and a blessing simultaneously. 

Although HIV is living with me, it has not defeated me by far. For the last 15 years, I have not had to take medicine to control or suppress my HIV, and as of 2012, in the National Institute of Health Long-Term Non-Progressor (LTNP) study and 2018, I was noted as an Elite Controller of HIV. Understanding the science behind my case of HIV drove me to become involved in research. The other blessing from this diagnosis has provided me with a privilege. The privilege is that I do not take medicine; having condomless sex before U=U became a hot topic after the Swiss Medical Journal article, and I am mentally strong upon my diagnosis, which remains today. 

Along with sharing my experience as a black woman living with HIV, I am so blessed not to have to experience some of the things other women living with HIV do, such as having the support of family, friends, mentors, etc. Pouring into me genuinely and finally becoming employed in the field has changed my life. Meeting people I never imagined meeting, going places I never thought I would go, etc. I was doing things and involved in projects, advisory councils, and the board of directors for a national network group of women living with HIV. I would not change a thing!  

But the takeaway from this reflection is that there will be times when there will be when you feel like giving up; in those times, remind yourself that it is okay to take a step back to redefine your purpose in this journey. Newly diagnosed with HIV, there is life after the diagnosis; the choice is yours on whether you want to thrive and live or exist. Find Your Tribe and Thrive to your fullest potential.

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.