Shame. Stigma. Not knowing where to turn or what to do. Feelings such as these often accompany genital herpes diagnosis and, for some, can be overwhelming. Healthcare providers in busy clinics often don’t have the time (or training) to fully deal with the emotional aspects of herpes, leading many patients to search for support from resources such as ASHA’s network of HELP Groups. Toronto HELP, one of the oldest and most established groups affiliated with ASHA, has long offered its members a comprehensive slate of services to address questions about herpes and to make coping with the psychosocial impact easier. To learn more about the Toronto approach to providing information support, we recently spoke with one of the group’s coordinators.
How active is Toronto HELP and what does a typical meeting entail?
We started in 1982 as a social group for people with genital herpes under the name The Phoenix Association. In the early 90’s we discovered ASHA, which we associated ourselves with in order to receive direction and guidance on offering self help to our members.
Every second Tuesday of the month, we have an Orientation Meeting for new members followed by a two-hour session where people gather in a circle and share their feelings, experiences or ask questions. Self-help is designed to be a supportive environment and participants are encouraged to share from their own experience rather than offer advice. Naturally we are very careful not to offer medical advice or promote one medical approach over another. We like to start with a check in and then open the floor to the members and the facilitator will often prompt the group by asking for success stories, or following up with a member who shared in a previous month. Typically questions are about when to tell, how to tell, medication, alternative health approaches, and how to deal with the feelings associated with herpes. Sometimes members will have strong feelings on certain issues and it is the facilitator’s role to allow for differing opinions while keeping the environment safe from judgment. From time to time we also have guest speakers at self-help.
Toronto HELP has reached out to countless individuals coping with the emotional impact of genital HSV diagnosis. What do you see as the cornerstone to getting beyond the shock, shame, and stigma that is too often part of having herpes?
This is a big question and I wish there were a simple answer. For some a diagnosis of herpes can be devastating and paralyzing, creating a severe emotional reaction. Support and help in the form of the techniques and facilities mentioned below are ways in which a HELP group can help people get beyond the shock, shame, and stigma that some associate with herpes and come to terms with their condition.
Universality: The concept of universality—seeing that there are other people that are the same as them is frequently mentioned by new members after their first meeting as a uniting, and gratifying feeling and major benefit from coming out. We frequently hear new members share that it was great to realize that they were not alone. This is the basis for the success of all special function groups (like Alcoholics Anonymous and other 12-step groups). Seeing that others with herpes are “normal”, hold jobs, have families and relationships is encouraging for the new member who through isolation imagined that people with herpes would somehow radiate some sort of negative energy. This aspect of dispelling preconceptions does much to start people with herpes on the path of recovery.
Support and Validation: Being emotionally supported in their feelings and knowing that others feel the same can be immensely therapeutic for new members. This is especially the case for those who haven’t told many people about their herpes, or those that were raised in a critical or judgmental environment. Feeling accepted regardless of where they are in the process helps members to move beyond their initial feelings. In other words, regardless of how people are feeling about herpes it’s important that they not be made to feel that their feelings are unusual, or judged for having those feelings. Being acknowledged with an “I understand how you feel” or “I can see that you are upset about this” can be the greatest gift one person can give to another. Telling others that they shouldn’t feel a particular way is harmful to their process.
Exposure: Often we meet people who haven’t said the word herpes out loud until they came to one of our meetings. Exposure is the antidote to shame and saying the word out loud in a safe environment helps new members alleviate shame especially when they realize that nothing catastrophic happened after they uttered the word.
Time: Coming to terms and accepting one’s self with herpes frequently takes time. It’s really a process of baby steps and is more about how people see themselves in the world with herpes rather than about herpes itself. New members hear from and see that others that have managed their lives with herpes. They hear success stories, approaches, and ideas as to what has worked for others. Over time this may lead to them feeling that they are ready to tell someone that they have herpes.
This is how it worked for me. I came to the group and cobbled together an approach I heard from what other members had to say. Firstly I used an idea I heard in the group—I told a practice person. This was someone whose acceptance I wasn’t attached to. After this I felt more confident to tell someone I wanted to date. Being accepted by her just built on my previous success and each time after that it became easier. Eventually I began to integrate the external acceptance I was receiving into a personal belief that herpes was just one part of who I was.
Knowledge: Having pamphlets and books available for new members helps. Some people feel strengthened by the knowledge they have on transmission and treatment. They feel empowered over herpes and prepared to answer potential partners’ questions about the virus.
Learning how to tell another about herpes is also an important skill. The best way to demonstrate this is experientially. Through role-playing, where one person tells another, the members have an opportunity to see how they feel about different approaches and make up their minds about what works best for them.
Ideally the goal of all recovery is acceptance and integration. In the same way that the herpes virus will always be with us physically it’s presence as part of our psyche will always be there. Trying to avoid or deny that we have herpes usually doesn’t work for long. Accepting, and putting it in perspective, is the shortest route to peace and acceptance.
Why do you think the psychosocial aspects of genital herpes so often hit people harder than diagnosis of other sexually transmitted infections (STIs)?
For some reason, the stigma associated with herpes has a greater negative impact than the stigma associated with other STIs. Clearly other STIs can be treated more effectively and even cured. Others still can be fatal. Strangely, herpes seems to straddle the middle ground of STIs. It is neither curable nor fatal, and yet seems to command a greater stigma than any of the other STIs. This is the paradox of herpes. What is often manifested as a mild skin condition has an emotional impact that is out of proportion with its physical properties.
Certainly the 1982 Time magazine issue with Herpes emblazoned on the cover and the bi-line “Today’s Scarlet Letter” propelled herpes into international consciousness and helped to create the negative impression that exists today. Speculation as to why there is so much negative stigma around herpes and less about other STIs is simply that—speculation. I would question the benefit to looking at the “why” as compared with efforts made examining the “how” herpes became stigmatized. Other medical conditions such as cancer and depression were also stigmatized at one time and no longer remain so. The process of how the shift occurred in the North American psyche is worth examining and serves to provide a template for the de-stigmatization of herpes.
Here in Canada a campaign of public information destigmatizing depression that began in the recent past has helped. Recently, a former Finance Minister spoke publicly in advertisements about the depression that lead to his son’s suicide. Presently one of the leading local mental health and addictions treatment centers began running radio ads stating that depression is not a failure of character, rather it is a failure in brain chemistry. As we approach the 25-year anniversary of the August 1982 Time magazine article, it’s a good time to evaluate whether there have been any shifts in the public consciousness around the stigma of herpes.
Toronto HELP has a PowerPoint presentation - tell us what you offer with this and the audience for whom this presentation is intended.
In its most recent form it is entitled “Recovery from the Emotional Aspects of Herpes” and is part of a day-long workshop that is both didactic and experiential. Designed for both HELP Group members and Coordinators, this presentation covers topics such as basic facts about herpes, stigma and the emotional aspects of herpes, the five stages of grief and herpes, what happens after the diagnosis, reframing and putting herpes into perspective, and the seven steps to telling a partner. The focus of the experiential component of the workshop is to help participants access their feelings and create awareness.
It’s been my experience that genital herpes can be a catalyst for the beginning of real personal growth for many people. For some herpes can be the proverbial final straw. Already struggling with other life issues like relationships, self-esteem, co-dependency, addictions, and depression, herpes is the final thing that leads some to therapy. If there is a silver lining to the cloud of herpes for many, this is it.
As a result of this need for almost two years now we have been running a psychotherapy group on Monday nights. Members who have herpes have the opportunity to look deeper at the issues that underlie our perceptions of ourselves.
For more information or to contact Toronto Help, e-mail us through our website. Please put Re: Article in The Helper in the subject line of your email as we get tons of spam!