If anyone with HIV could consider themselves "lucky," I suppose I could. "Lucky" because within one week of my diagnosis, I was fortunate to have found the only support group for women in existence. I was late for the meeting. I sort of intentionally got lost on my way, as I simultaneously ran both from and to the very situation I needed. I had to talk to somebody who would understand my absolute panic.
I was absolutely petrified about walking into that room, fearing that I'd encounter a group of emaciated, sad, sickly women. Instead, I met a group of beautiful, caring, fabulous women. I couldn't believe how wonderful and alive they all looked. I felt instantly relieved.
As I was late, the group had already started. One attractive women with short red hair was calmly talking about her daughter and her family. I remember thinking, "She's just talking about normal' things. How can that be? Isn't she frantic?"
Everyone introduced themselves to me and told a bit of their individual histories. The woman who had seemed so composed and self-assured in the midst of this disaster was Ann Copeland. It was clear to me that Ann was much more involved in her own life, in living it & having it, than in succumbing to some disease.
Just seven months later, in January of 1991, Ann Copeland & Linda Luschei, another woman from my first support group, formed Women At Risk. Linda & Ann both knew how absolutely crucial the support group was to both their emotional, psychological and physical well-being, and decided to help bring other HIV positive women together, wherever the need arose.
Women At Risk has expanded and now has four programs. The first is starting and maintaining support groups for women. The second is One-on-One peer companion program. The other two programs focus on education and prevention through their Speaker's Bureau and their "Should I Be Tested?" workshop. Ann and I discussed all the programs one very difficult evening after we'd just visited our friend and the Co-founder of Women At Risk, Linda Luschei, in the hospital.
Currently, Women at Risk has five support groups located in Hermosa Beach, Santa Monica, San Luis Obispo, Torrence, and South Central Los Angeles. Two of the groups are ethnically oriented; Torrence is mono-lingual Spanish speaking, South Central is for women of color. We discussed how various backgrounds, social, economic, and racial issues affect a support group.
"I think there are some barriers. They exist more because of economics than ethnic differences. People with HIV are a separate race of people, in and of themselves. What we don't see in support groups are women who are economically disadvantaged. They just don't come. Somebody who has private insurance is in a whole different ball-game than someone who's getting public benefits. I think that's where the barriers lie," Ann relates.
Women at Risk's support groups are unique in their structure. Each group is co-facilitated by a licensed therapist and an HIV-positive women. Women At Risk thought that it was important, especially for newly diagnosed women, to have the assistance of trained professionals, as well as the advice and perspective from women who had "been there." "I think our success has to do with the fact that we stay in such close contact with everybody. Going to group is hard. It's depressing sometimes. I call people before group and talk to them and remind them to go. You really have to remind them that they need to be taking care of themselves by going to group."
And there is no better way of taking care of yourself than going to a support group. We may not know from one day to the next what medication works or doesn't, or what Chinese herb is currently showing promise, but we do know that attending a support group prolongs life for any person with a life-threatening illness such as cancer or AIDS. People who express their feelings are the long-term survivors.
Ann points out, "A lot of people don't realize that their basic education is going to come from a support group. The best information, especially for women, is going to come from another woman. You don't know if what you're dealing with is real or not, until you hear it from somebody else. If nothing else, go there to learn about the disease. Go there to find out what's happening to you. Because you're not going to get it in a book, and you're not going to get it from some doctor."
Some women aren't ready to join a support group. They just want telephone contact with another positive woman. There are about 10 volunteers who take calls or will call someone at their request. In the first quarter of this year, Women At Risk served 35 women on a one-on-one basis.
"Women call us from other parts of the country who live in small towns. We may be their only contact. Occasionally, we've been able to hook them up with somebody closer, like in a neighboring state."
In addition to providing individual support and advice over the phone, One-on-One Support also takes women to doctors appointments. Women At Risk knows the importance of good communication with health care providers and doctors. They help women who are newly diagnosed (and whose minds are blown) to understand what the doctor is saying and to be certain the woman is not afraid to communicate with her doctor. Also, when someone is sick, they often get confused and don't fully comprehend what's being said. Having an HIV-positive women there to distill the information & advocate on the patients behalf makes for a much less stressful situation.
"Our Speakers' Bureau is great." Ann's enthusiasm reigns. "We've got 15 people who get out there and speak. We don't advertise, we don't even have a brochure, but we get a call almost every other day requesting a speaker."
The Speakers' Bureau is definitely a benefit to both the speaker and the audience. Ann explains, "You feel really brave saying, I have HIV' then being accepted. There's a real high with speaking."
They speak regularly at Cal State Long Beach & Kaiser Permanente. Audiences range from elementary, high school & colleges to law enforcement agencies, nurses associations & other health care providers.
"Often we're speaking to health care providers who really don't have a sense of what it's like working with an AIDS patient and they've got a lot of fears. We just talk to them about what it's really like and what we need. We need patience. We need understanding. We need contact."
The speakers are not formally trained. Most of the time they just tell their personal stories and speak from their hearts.
"This workshop grew out of a need for education which became evident when Women At Risk received several calls from women who thought they should be tested, but were afraid. The workshop consists of a panel of divergent people. There is a psychologist who talks about why people are afraid to test and then discusses their fears. A medical doctor presents an overview. There is a safe sex program. Several people who tested positive all talk about their lives. There's also someone who tested negative and tells about the ordeal of going through the testing process.
The whole concept of the workshop is to educate people, to encourage testing, to alleviate fears and hopefully, to make people take a look at what their doing."
Women At Risk is located at 5183 Overland Avenue, Suite B, Culver City, California, 90230. Their office hours are 10:00 - 6:00, Monday through Friday. The phone number is (310)204-1046.