My HIV Turned 21

How I turned my diagnosis into a life of advocacy

by Connie Rose

Connie and Sugar Bear. Photo by Sean Black

It’s Our Party and We’ll Cry If We Want To was the theme for my day of diagnosis.

When I was first diagnosed February 20, 1996, my whole perspective of the world changed and how I began thinking changed, also. I was no longer free to be careless with my life or the lives of those around me. Finding out that the baby I gave birth to and nursed was HIV-negative gave me the reason I needed to keep my health in tip-top shape. I was given a second chance at the beginning of life with HIV. That baby, she is twenty-two today and HIV-negative with a son of her very own.

I went into a state of denial all those years ago because I didn’t think I would live long, even though people were seeing good results with the new medications. At that time I was part of the population who thought people with HIV were still dying. I heard the best action was to get on treatment to control the virus but at that time only people with a CD4 under 500 were given HIV medications daily.

Next best option, I started my first clinical trial and was on twenty-two pills a day at varying times of the day. I was working full-time and I was a single parent to a two year old little girl, all while living in a place where compassion and understanding do not go hand in hand. Thankfully, I found refuge working at a local inn and a local convenience store for people who knew my status and only wanted to help. I kept both of those jobs for more than fourteen years each and the people kept my secret. I am sure their confidence gave me the next second chance at having a better life during this time; they taught me that I shouldn’t accept a job from anyone who doesn’t know my status and to understand that having HIV affects my life but not my work ethic. That is evolved thinking and I am so thankful for the chance to tell people my story now because I need them to see this is not some “theory” of what will happen if you give PLWHIV a second chance in your life. We will surprise you!

Many of us have been prejudged from the moment someone finds out we have HIV. Knowing that makes me want to ensure that the people who are getting their first experiences as a person living with HIV/AIDS are being treated well. The one group of people with whom I’ve worked and had no issues is, of course, the HIV community because those are my people, that is my family. In the last four months I have earned a certificate of completion from Stanford University, accrediting me to begin co-facilitating Self-Management and Healthy Living with a Chronic Illness Workshops, a position offered to me by Dignity Health of Las Vegas. In addition, I have earned my first certificate of completion for attending an HIV conference here in Las Vegas. This honor was free of charge to me because I attended on behalf of the Community Counseling Center of Las Vegas.

I see my second act of being a PLWHA no longer behind the scenes any longer, watching others propel our community toward bigger and better things. I see myself as a peer navigator and a health educator helping more than just PLWHIV.

In my next twenty years I hope to see the end of HIV/AIDS with a functional cure for all, and then I will move on to helping someone else because that should be the purpose of the collective and the purpose of all advocacy. We should not be focused on only individual issues, but, as a whole we should work towards a better future for all life on this planet or we must admit fault if we fail to do so. Because until we care about everyone we can’t expect anyone to care about us. Or as my grandfather used to say, “Be an ant, don’t be a crawdad because ants work together and crawdads think individual.” What helps me the most has been having the opportunity to help others who are just beginning or learning to live with their HIV diagnosis.

Like the title says, my HIV turned twenty-one on February 20 of this year. That’s a lot of experiences that could be shared with others, and perhaps give them hope to see that, during those twenty-one years, I have lived and worked and I was married and had a negative baby. So, yes, HIV sucks and having HIV sucks even worse but it is not the end of the world. For me, it was only the beginning of a new lifestyle that grew into a new life, twenty-one years later—that’s even better than I ever dreamed it could be.

Connie Rose, a long term survivor since 1996, lives in Las Vegas with her daughter, grandson and best fur buddy, Sugar Bear. She is the founder of Livingapozlife on WordPress, trying to change the world one blog at a time. You can follow her on Twitter @Cricketlv and other social media sites.