The Pros and Cons of Living Out Loud

Submitted on Jan 16, 2015 by  ConnieLJohnson

I had the immense pleasure of attending and participating in PWN's First Annual Women's Conference in Fort Walton Beach, Florida in October compliments of The Well Project and A Girl Like Me. While there I was offered the opportunity to co-facilitate a workshop that focused on encouraging women to utilize their natural gifts to promote community and build political and social power within that community. This experience was indeed one of many highlights of 2014. Oftentimes I am dismissed from workshops, conferences, meetings, etc. temporarily excited about the experiences shared, the information offered and the camaraderie felt. Upon returning home I tuck away the tote bags, name tag, and conference booklet in preparation to readjust to "real life" but this conference was different. I returned to Chicago filled with pride and confidence in knowing that I am a part of a much larger entity determined to stamp out negative HIV/AIDS-related stigma and fight on behalf of positive women across the nation.

Being in a room filled with women from various walks of life who I share a common thread with opened my eyes to the fact that I have been quite fortunate in my activism, advocacy and determination to live out loud. Many of my "Blood sisters" expressed their limitations of disclosing their HIV status for one reason or another. Some had children who might be affected, others hadn't informed family members and a few discussed the ramifications disclosure could have on their relationships and employment. I honestly hadn't given much thought about how often and freely I disclose my HIV status until I listened intently as my sisters agonized over how their inability or unwillingness to disclose might adversely affect the efficiency of their advocacy. I sympathized with them and indirectly identified with their dilemmas.

As a senior in high school I was sworn to secrecy by my mother who was diagnosed with AIDS in 1995. I could literally count the number of people who were aware of her condition on one hand and three of us lived in the same house. Every day I carried her secret around like a fifty pound sack of wet cement simply because she asked me to.  Because she lived in the rural South, belonged to a semi-prominent family and was being treated during a time when few people in the area truly understood AIDS, even the medical professionals, my mother's hesitance to disclose openly and frequently made perfect sense.  However, my mother's decision to remain silent ultimately cost her her life and the emotional support of concerned family members and friends who were completely blind-sided by her untimely death.

Almost immediately after being diagnosed I began telling those closest to me that I was HIV positive. My family and close friends became an instant support system that was vital to me seeking a physician and staying in care. Years later I disclosed within my faith community which proved to be the most intimidating space to even mention HIV/AIDS much less admit that you are living with it. Laying aside the fear of potential rejection and ridicule I stood before the congregation and told of God's wonderful works, having achieved an undetectable viral load after it had reached as high as 50,000 was a personal miracle, and I felt compelled to share it. Before I finished speaking the entire church erupted with praise. As I walked down the aisle back to my seat unsure what kind of reaction to expect, I was embraced by men and women alike with tears in their eyes, celebrating the victory that had been won.  That day my support system ballooned from about ten supporters to at least one hundred people who I knew without question had my back and wanted nothing more than to see me happy and healthy. That experience gave me the strength and permission to disclose to anyone at any time. When I disclose now the reaction of the person on the receiving of my news doesn't faze me.  Sure I've been discriminated against for a job or two and recently politely rejected by a potential suitor but those experiences are minute compared to the encouragement, inspiration and support I receive by living out loud. 

The potential of being rejected is worth it to me if I am able to positively affect another life with my story. The freedom to live my life openly and honestly with anyone that crosses my path is priceless. As I listened to my sisters at the conference discuss the various reasons that they can't or don't disclose, my heart sank with sadness for them because I know the burden of holding onto the "secret". I know the mental anguish of wondering "who knows" through my mother's experience. My hope for them and every other woman walking in their shoes is that they one day come to know the freedom of disclosing without reserve or hesitation.

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