Connie acquired HIV at twenty-one years of age from her husband because she didn’t ask for an HIV test before they married, and if he did know he didn’t tell her. Forty-one, Connie is a mother and grandmother living in Las Vegas, Nevada, changing the world one blog at a time. When she is not writing for multiple ticket venues, she manages and writes for her own website, Livingpos.com, an information and blogging site dedicated to the four H’s in the STD community. She also is an advocate in her local community and on social media.
A Chat with Connie:
1. How long have you been living with HIV?
I was diagnosed in Feb. of 1996. At that time the man I acquired HIV from had been apart from me for over a year. I believe I was infected directly before or just after the birth of my daughter who is, btw, HIV-Negative.
2. What does hope mean to you?
To me, hope has many meanings. Hope to me in full means there is a chance that tomorrow will be better than today if I do better things in my day to day, everyday. I like to use hope as an acronym for instance:
3. What is your current role in HIV advocacy and what roles would you like to expand into?
Currently, I am the founder of the website livingpos.com, an information and blogging website dedicated to awareness for the 4Hs in the STD community, HIV, HSV 1&2, HPV, & HCV. I help others who live and suffer in silence find their voice via social media which helps eliminate stigma by giving voice to more people who can in turn come out and support those of us who are in the public eye because that is very difficult some days and their encouragement has meant so much to me.
I never realized how difficult being so public was going to be, but it has all been a great learning and growing opportunity for me. I am expanding into v-logging this year. Also, I am working with a number of home-based advocates who are helping me organize online video support groups for people in rural areas.
4. How do you define success as an advocate?
Being part of the solution, not being a part of the problem.
5. What made you want to share your story with the world? Was there a deciding moment or experience that inspired you to help others?
I have shared my story with family, friends, and co-workers from almost day one. I thought I was helping to create awareness in my small community. It was not well received so for our safety and sanity I decided to wait until moving to a large city where there were more opportunities and encouragement for people to speak out. My deciding moment was the first time I received an email from a person who told me they were going to commit suicide until they read my stories of successful living on a secret site that I began blogging on in private. She found me and reached out to me via Facebook and told me her story.
6. What’s the best part about being involved in advocacy?
Getting to meet all of the people who thought they were living and suffering alone. The relief I hear in their voice when they find our groups online is enough to keep me speaking and reaching out.
7. What is the hardest part about advocacy and what would you say to others who are considering sharing their stories with the world as well ?
The hardest part is not being able to help everyone. Those considering speaking out should be prepared for a lot of hard work, a lot of criticism, and try to keep an open mind.
Always remember “Forgive the ignorant for they know not what they do” ~ Ryan White
8. Do you feel being an advocate has impacted your mental health and if it has, how so?
It has impacted my mental health. I think in a very good way. Being part of such a diverse group of people has opened my eyes and expanded my understanding of so many cultures and for that I am forever grateful. It also tries my limitations because I live with DID, depression, anxiety, and a host of other issues stemming from carbon monoxide poisoning in 2009. These issues cause me to want to isolate myself, a lot but my advocacy keeps me involved and focused.
9. What do you do to work through the compassion fatigue or the feeling of “burn out” so often felt within the advocacy community? Do you have any specific tips, tricks, or words of advice in that regards?
I exercise, I pray, I remove myself once a week for a solid day of away time. I bike ride and I spent time with my dog, Sugar Bear.
10. If you had the entire world’s attention for just one moment to hear what you had to say about HIV, what would you say?
Get tested, know your H (all of them) status, respect each other & protect each other.
11. Are there issues in particular that you feel are currently left out in advocacy and if so, how can we go about changing that?
I would like to see more heterosexual men and women in PrEP campaigns because HIV could have been prevented in my case and in the case of the man who was dating me before the reality of TASP who acquired HIV from me and then went on to infect his next wife. I get very upset when I hear people talk about how heterosexual people are not at risk of HIV. That is the most asinine thing I have ever heard in my life.
12. What would reaching the eventual goal of a cure and vaccine mean for you as an advocate?
A new beginning
13. How can people get in contact with you? Is their a blog, social media platform, or email you would like to share?