In this issue we feature a conversation with Mary Jones, MSW, coordinator of the Richmond, Virginia HELP Group. The group is co-sponsored by Richmond’s Fan Free Clinic (so named because an aerial view of the area shows streets that spread out like a “ fan”), an agency that offers medical and social services to underserved populations.
What led you to become involved with Richmond HELP?
Upon leaving graduate school in ’89, I was hoping to find work as an AIDS service provider. I was drawn to the possibilities of working with loss and helping those discriminated against because of their diagnosis. As a volunteer in STD training at the Fan Free Clinic, I was suddenly handed a large box of Helper issues and asked to facilitate my first HELP meeting the following night! There was little I could do ‘cold turkey’ but invite the members to share their expertise. Our room resembled an oversized closet with a single, dim bulb, with several sitting people on the floor. THEY were the ones who offered me safety and a sense of security! I was totally mesmerized by their candor and sense of hope. I wanted them to invite me back because I had already decided this group would never lack for advocacy as long as I had a voice.
As I assumed different positions within the agency, I began to see many parallels between those struggling with HIV, herpes, hepatitis, and HPV. We were excited when ASHA asked if we could accommodate those with HPV. For me, being a facilitator of multiple groups was like being part of one large family of personal choice. Since the mid-90s then, we have been recognized as Richmond HELP/HPV Support Group. This is because a diagnosis of HPV may follow an HSV diagnosis or vice versa.
Describe a typical Richmond HELP meeting.
Our group convenes from 7-9 p.m. on the second and fourth Tuesday of each month. Thanks to community donation, Fan Free provides us with low lighting, a collection of comfortable sofas and chairs, and audio-visual access. Members provide popular refreshments. New members have already been told what to expect and are given information packets filled with ASHA and CDC materials on HSV and HPV, as well as relevant websites and local resources. Our membership age has ranged from 17 to 62 years, and includes students, blue-collared to elite professions, expecting parents, significant others, and alternative life styles.
Following our welcome and request for anonymity, each member gives a first name and diagnosis: HSV-1, HSV-2, HPV, or both. This gives members the opportunity to immediately ‘put a face with a virus’ and communicates the message, ‘you are not alone’. I have found it best to weave in educational updates, because new members are anxious to present their concerns. We anticipate that the ‘new’ may bring with them a sense of disappointment with former partners as well as medical providers. We are blessed with a core body of ‘graduates’ who attend, wanting to empathize, share, comfort, and offer their own expertise.
As a facilitator, this is an excellent time to correct myth, present choices, and offer relevant scenarios that have unfolded over the past 15 years. I like to instill a sense of appreciation for where each member is in terms of his or her own self-redefinition healing process, which seldom lasts over a year. Topics include shedding, ‘telling’, traditional and alternative therapies, vaccine update, treatment options, safer sex, and relationship assessment skills. Members are invited to also share ongoing stressors that may hamper their recovery. Our mission is to comfort you where you are, educate, and facilitate a wiser sense of self.
What kind of activities does Richmond HELP engage in beyond meetings?
Activities are always ongoing beyond group hours—meaning that members carry out ‘personal story’ advocacy and distribute group brochures whenever a medical provider affords time. As an example, I was most recently filmed to do HPV advocacy with University of Richmond students. This gave me the opportunity to enlighten students that HSV and HPV can go hand in hand. Furthermore, HSV cervical re-activation may facilitate persistent HPV.
Our annual Open House invites former and present HELP group members, their significant others, and relevant community advocates. We offer information and educational materials about HSV and HPV. This year, we will be reaching out to the HIV community with educational emphasis on the potential synergistic effect between HSV and HIV.
Thanks to member hospitality, we celebrate the holidays with an annual potluck Christmas dinner, with invitations also extended to significant others. But we also like to surprise ourselves with spontaneous informal gatherings. For example, different members will host bowling or dinner theater/movie outings. This fall we have chosen to visit a local a healthy sexual paraphernalia store where each will make a purchase and report at the next meeting their choice of ‘options for intimacy’. This idea is prompted by the shame image that can accompany the recently diagnosed. It also allows us to discuss safer sex options such as the female condom or microbicide clinical trial progress. The field trip also brings opportunity for HELP group brochure distribution.
What would you tell someone who’s thinking of attending a meeting but isn’t quite sure?
This may occur with the newly diagnosed, those who have never shared their HSV diagnosis, or those who have recently separated from long-term partnerships. In fact, we offer many choices designed to promote a sense of safety and well-being. Initial phone connections may be lengthy or frequent and are designed to build rapport. We offer educational packets in plain manila envelopes, arrange for one-on-one encounters on site, or provide phone connections with seasoned, group volunteers. Mainly, people just want to know that we are ‘legit’, endorsed, and ensure anonymity. Only once in 15 years have members recognized one another, but soon embraced the concept that ‘we are all in the same boat’.
I feel free to share member quotes: “Meetings are informative, you get to meet people, who like you, are going through the same thing. You get answers to all types of questions about STDs, which you would probably feel uncomfortable asking doctors or nurses. I feel group allows people to open up and get things out, make new friends and re-gain pride in self”. Another group teacher adds: “They should come…because it helps to talk with someone that understands what that person has been through…Make sure they understand we are very private here”.
And I would say to the hesitant that we would be honored by your attendance. Things will and DO get better. We trust your healing process and hope you will allow us to assist. In fact, we provide the ‘cocoon’ and the tools, then celebrate your transformation into a stronger, more vibrant, wiser and healthier YOU. After all, we have been privy to at least five successful ‘graduate’ marriages and several present engagements!