Herpes type 2 (genital herpes) is incredibly common.
Of Americans who are over 40 years old, 20% percent have the herpes type 2 virus, and 12 percent of Americans under 40 have it as well.
In addition to herpes being common, it is common to have an intense and distressing reaction upon hearing that you have it.
“Herpes is a challenging diagnosis,” says Janeen Burlinson, vice president of clinical services and quality at Planned Parenthood of the Pacific Southwest. “There’s so much stigma about herpes, and it leads to so many questions that don’t have a black and white answer. Patients often have concerns about whether to tell partners, the health of future pregnancies, and how this new diagnosis will affect their lives.”
San Diego City HELP (Helping Educate Loving People), a nonprofit herpes and HPV (human papilloma virus) support group, is available for people who have herpes or HPV and their partners. The group supplies free information and emotional support.
A full 95 percent of the people in the group are there for herpes, and 5 percent for HPV.
Dr. Terry Brazell, Physician at the STD Clinic at the Health and Human Services Agency, has facilitated the group since 1996.
“People are blindsided by a herpes diagnosis,” Dr. Brazell said. “There’s anger, depression, self-shaming.”
The goal of the group is to help people gain a healthy acceptance of the role the virus plays in their lives; a person has to come to terms with having the virus and decide how they’re going to deal with it.
The group is free and confidential. It meets on the first and third Thursdays of the month at UC San Diego Medical Center at Hillcrest, on a drop-in basis.
Dr. Brazell has been a witness to the feelings of depression, isolation, and decreased self-worth that can occur.
“Herpes is forever. If you’re participating in a ‘karmic good life,’ you need to disclose to sexual partners that you have it,” Dr. Brazell said. “I’m not a religious person, but karmic stuff is real.”
Some people who receive a herpes diagnosis encounter a clinician that may not have the time or bandwidth to discuss herpes in depth, like Dr. Brazell (or a Planned Parenthood clinician) would.
“It’s hard to discuss herpes with your regular doctor, in their time limits. I ran the STD program in the 90s; people would be crying and you’d have to leave them to see other patients. It was really a challenge.”
There is a wide cross-section of people who attend the support group.
“We start out with a disclaimer, that the group’s confidentiality is important. People feel free to talk as they wish, and we don’t use last names. We see people who get herpes during their first sexual interaction, when they’re 18 or 19. We also see people in their 50s or 60s. Sometimes people are re-entering the dating world and they want to hear what’s new.”
The first-Thursday meeting is the General Support Meeting. It is facilitator-guided and covers how to talk to sexual partners and deal with herpes-related issues. No one is ever required to speak, though people can share experiences and ask for feedback. Frequent topics include coping with feelings, and how to tell a new partner about having herpes.
The third-Thursday meeting is the Medical Information Meeting, a casual question-and-answer session. Dr. Brazell officiates as the medical advisor. A short video is shown, then Dr. Brazell answers questions and provides up-to-date, factual information about symptoms, treatments, and clinical trials, with occasional guest speakers.
There are 3 to 15 people at any given meeting. There may be 2 to 3 with a brand new diagnosis, as well as people who’ve had herpes for 20 years.
The group also coordinates with Meetup groups, if a person wants to participate. “I used to be uncomfortable with the dating aspect,” Dr. Brazell said. “But for a lot of people after an STD diagnosis, a Meetup group isn’t unreasonable — a lot of people meet that way.”
(Note: Dating site OKCupid, for one, has questions about STDs that you can choose to answer. You can then filter your partner searches via those specific questions and answers.)
As Dr. Brazell has been managing the group for so long, she is eventually looking to retire and turn the group over to another medical advisor; new board members are welcome as well.
Many people have herpes — and talking about it can help.
“Support groups can be a great way to meet and connect with others who are having similar experiences,” Janeen said.
For more information about this group (or about advising or being a board member), go to www.SanDiegoCityHELP.org.
San Diego City HELP is a California 501(c)3 nonprofit and is affiliated with the Herpes Resource Center of the American Sexual Health Association: www.ashastd.org.
The meetings are free and are held on the 1st and 3rd Thursdays of each month, 7:30 p.m. – 9:15 p.m., in the Admin Conference room at UC San DIego Medical Center in Hillcrest.
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