‘Herpes Made Me A Better Person’: A Spotlight on Rae Higgins

By Emily Lowinger May 20, 2019

Rae Higgins is a nurse and sex educator originally from Prescott, a very small, pretty conservative town in Arizona. Now based in Austin, Texas, she contracted HSV-2 in 2016. For a long time, she felt very much alone. It wasn’t until 2018 that she did something about it, got really serious about her own self-healing and started diving really deep.


2016 was a particularly rough year. She learned that the HPV she contracted along the way ended up loving her vulva. Thanks to the herpes, she was constantly checking out her body. “I straddled a full-length mirror almost every day for two years, just checking out my body, wondering what’s up,” said Higgins.


She noticed a bump, and between that and the herpes, she went to the gynecologist eight times that year. “They were like, ‘Oh, let’s just watch it.’ Well, finally nobody was doing anything about it, so I took matters into my own hands and got a different doctor, and they biopsied it right away and it was pre-cancer.”


Higgins had to have surgery. They removed the bump with a laser ablation, meaning they burned off several layers of skin near the opening of her vagina. “I didn’t like sex for a long time, with the herpes and the pain and the shame of it all,” said Higgins. “I just didn’t want to have sex. But as humans, I think sexuality is a big part of our day-to-day, if not a big part of our lives. When you feel disconnected from your body, it’s kind of like you don’t really have a home anymore.”


Reclaiming her pleasure was a huge part of Higgin’s healing process. “I didn’t want to be afraid of pleasure, or at least be afraid of sex where I wasn’t experiencing pleasure. So that was part of my healing process was exploring Yoni Eggs, which are just like gemstone crystals that you insert into your vagina for healing, metaphysical properties, and also strengthening of the pelvic floor.”


The more she started talking about this to people, the more she noticed people clamming up. The women she was talking to seemed to have a big problem talking about pleasure. “In my experience, most women struggle with either owning their pleasure, talking about pleasure, and asking for pleasure. I just went down this rabbit hole, like, Where did this come from? Why do I feel like I’m not deserving?


Higgins looked back at her own sex life. She lost her virginity when she was 15. The sex education she had in high school was abstinence-based so she was already throwing that out the window. Nobody was talking about how to enjoy sex.


“All I had to go off of was the movies and porn,” Higgins added. “I faked what I thought I was supposed to look like during sex, and how I was supposed to act. I didn’t know how to ask for anything because I didn’t even know what to ask for.”


For Higgins, the book, Pussy: A Reclamation, was life-changing. She recommends this book to everyone she comes into contact with. The book’s author, Regena Thomashauer, points out that women were made with a clitoris, which is an organ that’s solely there for pleasure. It has no other real purpose. “They used to think it was there for reproduction,” explained Higgins. “They thought having an orgasm causes you to contract and draw the sperm closer to your cervix, but how many women get pregnant without having an orgasm? Right?”


You gotta love yourself first.


Clichés like that may be a bit corny, but they have a lot of truth,” explained Higgins. “They came from someplace relatable. All of us have been kind of in that rock-bottom place where you can’t let anybody else in until you kind of face the problem head on yourself.”


Higgins realized she had to experience pleasure, more self-pleasure especially, in order to heal. “For me, healing meant getting back in touch with my own body and trusting it again and feeling deserving of that kind of love and pleasure after facing something that felt so shameful and stigmatized and lonely and dirty. I had to fight with pleasure.”


You gotta let people in: people who are close to you.


For the first year and a half following her diagnosis, the only other person who knew about it was her partner, who she recently married. Eventually, she told a close friend who reacted very positively, which gave her the courage to open up to her mother. “Once I told my mom, it opened up the floodgates.”


Higgins advises people with a recent diagnosis to disclose to friends and family before trying to date or have casual sex. “People immediately start being like, ‘Who’s going to date me? How do I have sex again?’ You need to be comfortable with yourself before you can share yourself with others. Start by disclosing to friends and family—people who already love you. Getting their support will help build your confidence.”


The confidence of having a loving, supportive network behind you can help boost your self-worth, according to Higgins. “It makes it easier to realize that if someone doesn’t accept you, then they’re not worth your damn time. It makes it easier to meet people and say, ‘Hey, this is what I’m living with. If it’s a problem for you then that’s fine. You have a right to your own sexual health, but this is who I am and if you can’t accept me, then see you later.’”


When you disclose to a potential partner, don’t act like it’s a deal-breaker.


“If you’re going to sell it as a deal-breaker, it’s going to be a deal-breaker. It’s just a part of you, it does not define you. It’s just something you live with,” said Higgins.


Positive Results

Finally disclosing to friends and family provided Higgins with great support system. However, she realized that nobody she told had ever lived with an STI, including herpes. She wanted to be part of a group of women who could relate to what she was going through. Higgins also felt that, after two years of healing, she could be helpful to other women who were struggling with a new diagnosis.


On top of that, Higgins recognized a niche that needed her: at the time, there wasn’t a herpes support group in town that catered to millennial women.


“I had attended a herpes support group in Austin, and it wasn’t my cup of tea,” said Higgins. “It’s different getting a herpes diagnosis as someone who is in their 20s as opposed to somebody who’s in their 40s.”


In addition to catering to older members, the support group seemed very misinformed about the diagnosis. “They had a lot of false beliefs or limiting beliefs about their diagnosis. I’m a nurse too, so I could quickly tell they had really basic things wrong about how herpes is contracted and transmitted.”


Higgins also noticed that the main concern of the group was how to get people dating and married. It was to the point where they were skipping over the self-healing and self-love, and attempting to heal through romantic validation from others.


“It almost felt like they were almost perpetuating the stigma because they wanted to just keep dating within the community, and it just seemed like this big group of people who were trying to hook up, and not wanting to have that disclosure talk. The attitude seemed to be, ‘Oh, well I have to be with somebody who has herpes because then I don’t have to have this really uncomfortable talk with somebody.’”


The experience left a bad taste in Higgin’s mouth. She wanted to create a space that flipped the script on the whole thing. “I wanted to create a space for women who wanted to feel empowered instead of shamed. I wanted women to feel like this wasn’t the end of their dating life, or casual sex even. I wanted to kind of put a different spin on what a herpes support group looked like.”


She created a Meetup and went from there. It was a long, bumpy road. Nobody attended the first meeting.


“I thought, ‘You know what, I’m going to make a bunch of stickers and I’m just going to post them up in bathroom stalls in all the bars in Austin,’” explained Higgins. “That’s how I did it. That’s how I got most of my reach. Everybody, actually, who has ever come to a meeting said that they saw one of my stickers.”


Higgins runs in-person meet-ups and a monthly online support group. “When I first started, I always had a plan, a topic that I was going talk about because that’s what I like to do, I like to educate. But you know, when we get in there, it all gets thrown to the wind because people just want to talk, and people just want to have a safe space to finally air this stuff that they’ve been hanging onto. So, it’s really an open floor, and people can say whatever they want to say, and we can share advice. If we want to talk about outbreaks and how we kind of manage those, or how we go about dating, we do. Most people have so many questions about sex, and what’s really tricky about HSV is that there’s not a whole lot of solid, concrete evidence out there.”


Higgins has found that everyone’s experience is very unique. The virus manifests differently in all of us, so she can’t rely on formulated answers.


Higgins calls her group Positive Results because she wanted a little play on words, but it’s more than that.


“It’s become kind of my destiny,” Higgins said. “I look at HSV now as one of the best things that’s ever happened to me, and people kind of scoff when I say that because…I mean, most people are probably still coming to terms with their diagnosis, but like I said, I spent almost an entire year just really facing it. Ultimately, it’s not a problem because, one, it really doesn’t affect me on a daily basis – unless I let it affect me mentally. I’ve only had four outbreaks in a span of three years. I know that not everybody’s as fortunate in that department, but physically, herpes is not a life-threatening disease. It’s very easily managed for the most part.


Once I got past that point where I was able to manage my outbreaks pretty easily, I started connecting to people and to myself on this really deep level, to the point where honestly, I’m a better person because I have herpes. Before herpes, I was really self-absorbed and I thought I was invincible. I wasn’t very honest. I was kind of an opportunist. I was really just not giving a good piece of myself to other people. Then I got herpes, and it kind of brought me to a screeching halt. I had to start immediately being honest with my newest partner. We just got married, and that wouldn’t have happened if I hadn’t been honest with him from the beginning.”


Higgins is a full-time nurse at a hospital, a part-time yoga instructor, and is currently getting her sex educator certificate at ISEE, the Institute for Sex Education and Enlightenment.


“If you Google pleasure, you’re going to find like a Cosmo article on it, you know? What’s nice about being in the medical field and in school right now is that I have access to all these peer-reviewed journals and articles and real studies.” Right now, Higgins is building her curriculum. In the future she would love to get into schools and teach, but doesn’t see it happening anytime soon.


Higgins points to how political school districts can be about sex education – especially in the south. She has been strategizing on how to reach her audience outside of schools. She may try offering her courses to moms who aren’t satisfied with their school’s health curriculum.


“Who knew that would be as difficult and time-consuming as it is? But I really want to produce some quality courses with really solid statistics and information, because I think a lot of information that is out there has been processed through pop culture – it’s not always accurate or helpful or humanizing.”