It’s easy to become discouraged after being diagnosed with an incurable virus like herpes. But for Dr. Kelly Martin Schuh, that diagnosis inspired her to continue on her path to becoming a chiropractor, and focus on helping women manage a life with herpes.
Herpes is an infection characterized by painful blisters caused by the herpes simplex virus, according to MedlinePlus. There are two types: herpes simplex type 1 and herpes simplex type 2.
Although both types of herpes can infect both the mouth and genitals, type 1 is most associated with cold sores on the mouth. Type 2 generally causes genital herpes, according to Medline Plus.
Dr. Kelly’s Story
Kelly, now age 40, was first diagnosed with herpes when she was 23. She later confirmed that she contracted genital herpes type 1. However, she also gets outbreaks on her face.
She was in Nepal when she got herpes, and although it forever changed her life, she has learned to forgive her past partner for giving it to her.
“I have no resentment, no resentment, absolutely none,” Kelly said. “I think that obstacles and challenges come into people’s lives, and I chose to turn a bright light onto this, and I really consider it a gift that I’m able to connect with so many women in a strong way.”
Although she had always wanted to become a doctor, contracting herpes did give her a new perspective as part of her journey when she decided to become a chiropractor.
“My interest in alternative health care definitely increased and led me to chiropractic school,” she added. “So I can’t say that it was herpes that led me to chiropractic school, but I’ve always had a passion in helping people.”
In her chiropractic practice, if Kelly saw that her patients had listed herpes as one condition that they had, she would make sure to bring it up and ask how they were doing. She was shocked at some of the stories she heard, and all the women who opened up to her.
Kelly currently has a wellness center in Colorado called Expression of Life, P.C., although her main focus has been her online support community for women with herpes, called Pink Tent.
Creating the Pink Tent
Kelly decided to create Pink Tent because there weren’t many online resources for women with herpes. Women are more likely to contract herpes than men, and women have a big fear of transmitting herpes to their children.
Pink Tent originally started as Talkaboutherpes.com in 2009, and then evolved to become Pink Tent in 2012, with the tagline “women supporting women with herpes.”
The mission statement is “to empower, educate and inspire women with herpes to live out their dreams of love, partnership and optimal health.”
“Years ago I read the book ‘The Red Tent’ and really liked the idea of creating just a safe haven for women to share their stories and get support and support one another, and create it in a way that they could remain anonymous,” Kelly said. “That they didn’t need to tell the whole world, to raise their hand and give their real name and say I have herpes.”
Pink Tent includes a free online forum, but Kelly also offers coaching over the phone for lifestyle and wellness for women with herpes, and she has a course women can take called The Foundations Course, which is a further resource for women with herpes.
“I feel blessed that women share this deep, dark secret with me, and that I’m able to help them shed a light on it and allow them to realize that it doesn’t have to ruin their lives,” she said.
Fighting Stigma
As part of her own personal journey, and from hearing stories from other women in her practice and through Pink Tent, Kelly recognizes that the stigma against women with herpes and other STDs is still a problem.
“I’ve had several women share with me that they almost wish that they had a diagnosis like cancer [instead of herpes], which is hard to believe,” she said.
She believes this stigma mainly rises from an unhealthy “concept and dialogue of sex in our culture.”
“Unfortunately I think that we have an unhealthy view of sex,” Kelly said. “Sex still today is taboo, it’s something that you don’t really talk about, while at the same time, we have the media that portrays women as sex objects.”
“There’s an objectification of women, but there’s not really a healthy outlet to share and to be educated,” she added.
Although about 1 in 4 women have genital herpes, according to the Office on Women’s Health, this condition is still considered to be linked to promiscuity.
This is due to misinformation and lack of awareness, which several organizations are trying to combat through campaigns such as April’s STD Awareness Month.
“People think that if they are protecting themselves, if they’re using condoms ... that they would never get herpes,” Kelly said.
Many people don’t realize that you can contract herpes even after just one sexual experience, and even if you’ve only had one partner, and even if your male partner wore a condom.
Another myth that people believe is that having cold sores is not herpes. However, cold sores mean that you do have oral herpes.
Some people also do not have any symptoms.
“People just don’t know that someone could contract genital herpes from receiving oral sex from someone that has a history of cold sores,” Kelly said.
She believes part of the issue with stigma, misinformation and transmission rates is the fact that many health care professionals still aren’t properly trained on how to handle herpes.
Some doctors don’t even test for it, even when they’re asked to test for all STDs. Other health care professionals may give improper medication for herpes symptoms, such as antibiotics.
“I’ve actually had several people share with me that their doctors and health care professionals, if they didn’t have any symptoms, or even if they did have symptoms, that they discouraged the test, they said oh well, don’t worry about it, it’s still common anyway,” Kelly said.
Along with increased training for health care professionals, we need more prominent women to share their personal stories regarding herpes to help fight stigma.
She points out that the AIDS and HIV community has done a great job of putting a face to the virus and educating the public.
“I’ve watched that stigma decrease significantly, and I just think that herpes is kind of behind the eight ball in that,” Kelly said. “When people realize that you’re making jokes about people that you know and love, it kind of takes away that place of wanting to make fun of somebody.”
Books of Knowledge
Kelly has written several books regarding herpes, although she is most proud of her book “Live, Love and Thrive with Herpes.” She started writing the book while her daughter was very young.
She was a new mom who wanted to stay committed to her vision of helping women and getting feedback from them.
“I’ve had several women say that literally this book has saved their lives, women who were suicidal over this diagnosis. There’s nothing in my life that I’ve ever done that I know for a fact that I’ve actually saved lives,” Kelly said.
“I know in my chiropractic business, we saw huge, life-changing things happen to people. But to get emails from women who I’ve never met before, telling me that they had the drugs on the side of their bed and literally it was the book and our online community that kept them from doing something — that is just unfathomable.”
In the process of writing her book, she looked at her past journal entries from the time of her diagnosis.
“Even in the midst of the chaos, and feeling like my love life and everything was over, [I saw] that maybe this was happening to me for something better ... that one day I would be able to help other women,” Kelly said.
At first, she considered writing her book under a pen name. She was worried about putting her real name out there as a doctor with herpes.
“And what I really realized is if I didn’t stand in my power, and stand and not be ashamed in any way, that I really couldn’t be the beacon of light that I wanted to be for other women,” she said.
“That was a journey in and of itself, realizing wow we’re really going to put this out in the world. I’m so glad I did.”
She’s gotten lots of positive feedback as part of putting herself out there. She has the occasional hurtful comments on YouTube videos and blog posts, though, including people calling her a slut and criticizing her decision to have a baby.
“People can be really mean, and you just can’t bring it home,” Kelly said. “I’m glad that those kinds of things, they really don’t affect me because I know these people are just ignorant.”
She added, “It says nothing about who I am, and I know that they don’t know me, and they don’t know where my heart is, and they don’t know my story.”
Her next project is to work on creating more products and services to support women, including launching live coaching calls and seminars via Pink Tent to help women with physical symptoms as well as the emotional and psychological impact of living with herpes.
Kelly has also considered creating a talk show and possibly hosting an online summit, which would both include other experts. Another long-term vision is to hold retreats for women for two to three days on the weekend, where there would be workshops related to living, loving and thriving with herpes.
Overall, her goal is to help women realize that they don’t have to allow “this silly infection to hold you back from your dreams.”
Love and Herpes
Navigating her love life with herpes was at first complicated, but Kelly wants all women to know that having a love life with herpes is possible. In fact, she is happily married and has a baby girl, Madeline.
The first man she told about her condition was actually very understanding, although it wasn’t an easy process.
“I cried like a baby and sobbed, and it was a big deal, and he was incredibly compassionate and said ‘hey we’ll figure this out together’,” Kelly said. “So the very first time I had to tell somebody, it was very traumatic.”
She has become more comfortable with her herpes diagnosis since that time. With her current husband the process of disclosing her condition was easier.
“I had reached a point in my healing where it wasn’t this big drama,” she said. “It was something that’s still a bit uncomfortable.”
“You never get 100 percent comfortable with it, but you just learn to stay in your strength, and realize you know what, if this person doesn’t want to move forward, absolutely it’s going to feel like a great loss, but it says nothing about me,” Kelly added. “They’re not rejecting me as a person, they’re rejecting the herpes.”
At that point in her life, when she was with the man who became her husband, she had learned how to manage her herpes and decrease the risks to her partner, so it wasn’t as big a deal.
Part of her success with managing her herpes has been through managing stress, rebuilding her immune system, taking natural supplements that target the virus, and having a diet low in arginine, an amino acid.
Although Kelly doesn’t take medication, there is the option of using anti-viral drugs to control outbreaks as well.
Disclosing a Herpes Diagnosis
Kelly notes that there are some basic rules that you will want to follow when first disclosing a diagnosis to a partner.
“Don’t wait to tell your partner when you’re in the heat of passion,” she said. “That’s not ideal for a number of reasons, one being that partner might say hey let’s go if they’re horny and they’re ready to go, and then they later regret it, and that’s a really uncomfortable situation for women.”
Also, do not wait until after you’ve already exposed someone to herpes to tell them, because that is worse.
It will depend on the level of intimacy in determining how early on you will want to tell a partner about a diagnosis. She suggests disclosing within the first couple weeks of dating (prior to a sexual relationship).
“Women don’t want to be outed,” Kelly said.
“Most women don’t want to tell a person right away because they’re so fearful, they don’t know this person well enough and they’re fearful that that person is then going to tell the community. It’s a dance, it really is a dance.”
Fortunately, there are ways to decrease the risk of transmitting herpes to your partner once you have disclosed your diagnosis.
“The number one way that a woman can decrease the risk of transmitting it to her partner is when she’s what’s called asymptomatic, or she doesn’t have symptoms, and that drastically reduces the risk to the partner,” she said.
If you’re asymptomatic, taking antiviral medication and using condoms, the chance of transmission is even less likely.
Although everyone has different morals and ethics, Kelly said that she believes a woman should disclose her herpes status to a sexual partner regardless of being asymptomatic and on medication.
“People take risks every day,” she said. “The greatest risk that we take every day is get in our car and drive. So it’s not that people aren’t willing to take risks, but I think they deserve to know what the risks are.”
As part of STD Awareness Month, Kelly would like to leave women with this last important thought.
“Get tested, because I think it’s important for us to know our bodies, and if you’re a sexually active woman, you need to be asking your partner to get tested too, because there are a lot of other things that are a whole lot worse than HPV or herpes or treatable STDs,” she said.
“I think that women need to take charge of their health, I think they need to ask their doctors for what they need ... and I think they need to be requiring their partners to do the same to protect themselves.”
Sources:
Martin Schuh, Kelly. Phone interview. February 22, 2015. http://www.pinktent.com/meet-the-doctor
Medline Plus. Herpes – oral. Web. March 30, 2015. http://www.nlm.nih.gov/medlineplus/ency/article/000606.htm
Centers for Disease Control and Prevention. Genital Herpes – CDC Fact Sheet. Web. March 30, 2015. http://www.cdc.gov/std/herpes/STDFact-herpes.htm
MedlinePlus. Herpes Simplex. Web. March 30, 2015. http://www.nlm.nih.gov/medlineplus/herpessimplex.html
Centers for Disease Control and Prevention. Sexually Transmitted Diseases (STDs). April is STD Awareness Month. Web. March 31, 2015. http://www.cdc.gov/std/sam/index.htm
Womenshealth.gov. Genital herpes fact sheet. Web. March 31, 2015. http://www.womenshealth.gov/publications/our-publications/fact-sheet/genital-herpes.html
Reviewed March 31, 2015
by Michele Blacksberg RN
Edited by Jody Smith