June 5, 2018: Positive Women’s Network – USA celebrates and honors the lived experience and wisdom of long-term survivors. June 5 is widely recognized as HIV Long-Term Survivors Awareness Day (#HLTSAD2018). We recognize that long-term survivors include those born with HIV and those diagnosed years ago as adults. Many of the challenges are different, yet there are commonalities. Today and every day, we value the lessons we have learned from long-term survivors as well as those we have lost.

Here are some of the stories from our PWN members about what it means to them to be a long-term survivor and what they have learned along the way.

Long-Term Survivors

by Katie Willingham

I remember when I was first diagnosed being scared out of my mind and paranoid that death was just around the corner at the next cold, the next night sweats, the next anything that was less than perfect health or normal for me. I’ve come a long way since then. I no longer live in fear of death because I’ve learned about the virus and the science that suppresses it. I’ve learned what it means to be undetectable and how to maintain it. I’ve learned many things about this disease that I didn’t know when I was diagnosed. There are things that others can learn from me, and if I can educate others and they can benefit from my experience, then I think that makes me a long-term survivor. Are you a long-term survivor? Read Katie’s full blog here.

Puerto Rico

escrito por Rosa Rivera Avilés​

Que significa para mi ser un “long-term survivor”? Wao; el VIH llegó a vivir a mi casa (cuerpo), en el 1997, 21 años atrás, ya es mayor de edad. No sabía nada sobre VIH, sólo que decían que era VIH-SIDA-MUERTE, así que pensé que me quedaban seis meses de vida. A dos meses de depresión profunda recordé que el conocimiento te apodera y decidí aprender sobre el VIH. Comencé a asistir a múltiples conferencias, conocer muchos activistas etc, pero al llegar a mi casa analizaba toda la información y comencé a darme cuenta que no todo lo que se escribe o se dice, nos aplica. El virus se torna único, personal, cuando se introduce en ti, entonces debía conocerlo a él como ser único. Lea el blog de Rosa aquí.

Surviving My Choices

​by Angel Stetson​

Hello, it’s been a minute since I wrote a blog. I am reminded of long term survivor day as it approaches. I was diagnosed in 1997. I suspected until yesterday I was given this condition through a sex partner as a teenager. My first boyfriend died of AIDS-related complications in 1994. He received several blood transfusions as a kid…

Today I thrive living with HIV. I have adjusted to a new way of life as I care for my human condition. I still feel sad that so many have lost their lives. People I loved were dying, yet I sat in denial hoping this would go away or kill me quickly. To see my friends suffer this incredible journey (mostly alone, except for me by their side), I made a point to be there with them, to cheer up, to cry, to just sit. I never told a soul I tested positive. Continue reading Angel’s blog here.

My Life Today

​by Tana Pradia​

In 2014, I met a fabulous woman, Venita Ray. She gave me the strength to get out and do the things I enjoy. I never thought I would be advocating and using my voice in an effective way. Growing up, I was never able to speak in front of other people. After almost dying in 2010 from TB, drug addiction and a T-cell count of 14, I was at my worst. My addiction was the hardest thing for me to overcome. I’ve been in every rehab in Houston and would relapse every 9 months for 15 years.

PWN-Greater Houston has given me back my life and most of all confidence to not give up on myself and my rights as a woman living with HIV. Most of all everything I do today gives me joy to help someone besides myself. Read more of Tana’s blog here. 

My Spirit Will Not Be Broken!

​by Shyronn Jones​

Despite some people’s perception of a long-term survivor of HIV, my presence redefines post era characteristics. First and foremost, I thank God for preserving my physical health, physical appearance and mental health. Being in permanent possession of God’s exceedingly abundant and unconditional love remedies all things. Secondly, I’m thankful for my self-perseverance. My spirit will not be broken! I had a positive attitude at the time of my diagnosis and I held on to that positive attitude throughout these 17 years of living with HIV.  Last, but not least, I thank my long-term partner “antiretroviral medications”. We had break-ups and make-ups. But, they been with me, when needed the most.

There are many other people and things I’m thankful to, such as my family, friends, fellow advocates, healthcare providers and reggae music (specifically Dancehall, Soca and Calypso). Being connected to the people, places and things I loved prior to my diagnosis and continuing to take actions to be the person I envisioned to be prior to my diagnosis keeps me in good spirits. Continue reading Shyronn’s blog here.

How I Became an Advocate

by Michelle Harris

​I found out in February 2012 that I was living with HIV, not knowing I had been living with it for the previous 10 years. After being in a medically-induced coma for almost five weeks and having coded on the table twice, I had no idea what my journey was about to be. I was suffering from severe depression because I had been married for 10 years, and my spouse had given me HIV. I continued to press and I asked God to tell me why He saved me. These thoughts went through my mind for two years. 

I then I decided I wanted to be in group meeting, but there was nothing in my area that I could use. There were meetings, but I wanted to be able to help people with AIDS/HIV or help to prevent them from going through what I was going through. One day I got a call and was asked if I still wanted to become an advocate and help. I said yes, and June 2017 changed my whole life.  Read more of Michelle’s blog here.

My Story

by Cheryl F.​

To me, the term “long-term survivor” is talking about anyone who has been living with HIV for a long, long time. I understand that for some people that may be 10 years. For some, it may be 20 years. There are even people who have been living with HIV for 30 years. Wow, now that is really a long-term survivor. Good for them.

For me, it has been over 20 years. I recently realized that it has been that long since my diagnosis. I had never really counted the years, but one day it hit me that I have been living with HIV for 20 years. This surprised me. 

When first diagnosed, I was hoping to live for 10 years. Then the new meds came out and here I am more than 20 years later. Living with HIV for this long has been a long road. Continue reading Cheryl’s blog here.

The Curse That Has Many Blessings

by Shelia Crockett

While I was locked in the county I met this young lady named Billie Sue who was there on a drug charge. One Saturday morning, I had an allergic reaction to the cleaning material, and I wasn’t able to talk. She was the only one who would help me. I had sores all around my mouth, and they were saying I had herpes. That wasn’t the case, just a reaction. 

Billie Sue nursed me back to normal until I was able to speak again and I told her that I would pay the gesture back one day. She left county before me to go to into the system for 4 more years. She reached out to me and we were close friends. I met her husband and daughter while she was still in the system. Whenever she needed assistance I was there, and for that when she was released she surprised me and came to my mother’s house. I had made an appointment with my doctor to get a physical and get tested. I was still curious about what had happened in the county jail. I received a call 2 weeks later to come into the doctor’s office. That was when the curse with many blessings began. He told me not to worry that I was HIV+. That was September 17, 1991. Read Shelia’s full blog here.