Welcome to Pillow Talk: A Weekly HIV-Positive Support Group

An email inviting me to Pillow Talk came at the perfect time, I had just moved to Kansas City, Missouri from Long Beach, California where I was living with my son, mother, and her boyfriend. I transferred from Long Beach City College to the University of Missouri Kansas City.

My son and I were supposed to move in with my friend from high school who is also a single mother. That move didn't work out like planned, my son ended up moving in with his dad in Illinois. I ended up in my own apartment with a lot of free time on my hands, and, as it turned out, this HIV National Zoom support group was just what I needed.

What started Pillow Talk

Deirdre Speaks and Pedro Benitez created Pillow Talk over 2 years ago. They came up with the idea after another group they were in had a newly diagnosed person came into a room full of long-term survivors. It was phrased that the newly diagnosed person had been shoved out of a skyscraper window and landed into a room full of pillows. Pillows of compassion, lived experience, understanding, education, non-judgment, and empathy.

Walls come down differently in safe spaces, where our shared HIV status helps build an instant emotional connection. We have all had D-Day, as I call it. We come from all walks of life, and HIV is our main connection. After hours, months, and now years of meetings it didn't take long for me to realize that a lot of our struggles are the same.

Who do you turn to as a person living with HIV/AIDS when you feel emotionally isolated, broken, or you just need an ear? Where do you go when your heart is broken or you need non-judgmental advice?

In comes Pillow Talk. What is that, you ask? Pillow Talk is an international HIV positive weekly Zoom support group it meets every Wednesday at 7pm Pacific Time. It can be found via Facebook, and the page is private. The only qualification for showing up and being let into the room is to be HIV positive.

What I have learned through this support group

In the Zoom squares of Pillow Talk on any given Wednesday night I found myself surrounded by HIV advocates, people who have helped change HIV criminalization laws in there states, as well as newly diagnosed people. I have met rapping grandmas, published authors, community health workers, and HIV Caucus Committee members. In this space I was introduced to, and educated about lifetime survivors, Dandelion's, or verticals as they used to be called.

Topics like HOPWA and HUD have been covered, people share their stories about the broken system and ways they fought back for themselves and their communities. We have had discussions on how to read and understand blood labs, we have discussed sex positivity, and disclosure. Guest speakers have educated us on life insurance and The HOPE Act which President Obama signed that allows people living with HIV to donate organs to other HIV positive people.

Having a space like Pillow Talk helps me feel less isolated even while living in a place where I only socialize with co-workers while at work, in the middle of a state I know few people and have no real support system. We have covered topics like PrEP for our negative lovers, mental health awareness sessions and emotional health check ins.

A support group for all living with HIV

This group helps me see that I am not alone in this struggle. They help me realize that none of us are alone no matter how far away we are from each other. I have gained a real support group. I talk to some of these members more than some of my long term non-positive friends.

Pillow Talk Zooms are full of open minded and big hearted people who could change your life. They have changed mine. The door is always open and the room is full of friendly faces who I have practiced presentations for other HIV groups. I have cried in there when my life felt overwhelming. Having a core group of people I feel comfortable being vulnerable with is everything.