by Emili Ema Sedlar

December 18, 2017: Support groups play a significant role for those living with HIV/AIDS, though it is not a subject that gets a lot of media coverage these days. And not every support group meets face to face anymore. For instance, in this article, we’ll look at an online support group, in which many women living with HIV come together in solidarity into a private group and share their feelings, concerns, recent news related to the U=U campaign and more.

A year ago, Jennifer Vaughan, an HIV/AIDS activist and educator, created a Facebook private page called The Lovely Ladies, a support group consisting of over 60 women living with HIV from all around the world. Vaughan, together with two members of the group, discussed with us the meaning of the support group and how much their lives have changed once when they all got to meet each other via online and started to share their stories. 

“I didn’t ask anybody to be this way. It happened completely organically and genuinely. It’s incredibly moving.”

Once Jennifer published her HIV/AIDS story on YouTube, she immediately received messages by women from all around the world, endorsing her work as an outspoken activist and educator.

Day by day, she started getting more and more messages, and then she realized how incredible it would be to connect these women together. “I started thinking, ‘The first one that contacted me, what if she knew the second one that contacted me?’ They could talk to each other,“ explained Vaughan. Furthermore, as the founder of the support group, throughout time, the whole process of creating and gathering together a group of women, was very emotional and cathartic for her, since she had no idea how valuable and significant it would become to many of those that were newly diagnosed and afraid to open up their stories.

“The list of welcomes that people give to that person, even people that recently joined, are turning around. That in itself, is magic: to know that there is this group of women who literally feel as if they were waiting for you, and you’re in this place so alone and scared,” said Vaughan.

In addition to this, when it comes to the inner structure of the group, there are countless topics that are of great importance to many women every day; thus the amount of support delivered each day is stirring.  “There’s an army of women there to help that one person. Some will say, for example, ‘I have a date, I really like this guy and I have to disclose to him. I don’t know how to do it. I’m terrified.’ There are many of those who have trouble with work and have asked what to do. There is always somebody that comes in; typically it is a conversation of 10 people,“ illustrated Vaughan.

When talking specifically about the women in the group and their conduct in the group, Vaughan mentions how she has learned a lot about the women in the group, in which she is inspired every day by many of them. “We all got an HIV diagnosis at one point and we all know exactly how that felt. That bonds us immediately. We’re family. There’s no barriers. There’s immediate affection and love.“  

On the other side, when discussing the ongoing fear of the stigma outside of the group, Vaughan understands the consequences. “I get it. Speaking out is scary. Once you’re out, you’re out. There is no turning back. There are a lot of mean people out there in the world who want to say you’re disgusting and gross, that you should go somewhere and die; that you’re a slut and deserved it. Women who want to speak out: be prepared, because once you’re out, you’re out.“

Anne Hellen has been in Jennifer’s group for over ten months now and is very proud of finding Jennifer and making contact with other women in the group. Anne Hellen has watched all of Jennifer’s videos and once when she got involved in the group, she felt much more at ease, since she knew that she was not alone. The women in the group became her inspiration and soon, friends. “I learned that our condition is not a death sentence. It is very manageable and life can be lived normally.“

One of the best aspects of the group, according to Anne Hellen, is all the support women give each other in many ways at any given time. That makes her very proud. “We give moral, social and at times financial support. Jennifer has such a huge heart, she really gets moved when one of us is suffering,“ noted Hellen.

Brittany, who joined the group last year in October, explained how it was the first time she had publically opened up through media about her HIV story. “My video with Jennifer is the first and only time I’ve shown my face and spoken about HIV. I wanted to do it for myself and for others to see me and realize I’m just a normal next door girl who went through all the similar pains and I survived it. One day it won’t be something to hide or worry what people think,“ elaborated Brittany.

One of the campaign projects Jennifer has gotten involved in is about a new medical phenomenon: undetectable = untransmittable, or U=U. When a person living with HIV has an undetectable viral load, they cannot transmit HIV to their partner(s) sexually—even without condoms. Many activists such as Jennifer have gathered women to talk about this important advancement in modern medicine.

Both Brittany and Anne Hellen find this campaign extremely impactful–something they come back to and talk about in the group. “We face a hard stigma being positive from our family, friends, co-workers, peers. We want to fight and educate people on this disease, because we didn’t choose this, and we need people to help and be there. Some of us do not have [a lot of support from those around them], but with this group, they do.”

If you’re interested in joining the Lovely Ladies, you can find Jennifer Vaughan on Facebook and send her a message.