When you test positive for HIV, you may feel like you’re alone. But there’s a support network out there ready to offer comfort, information and referrals to care
Not everyone is ready to reach out as quickly as Shirlene Cooper did after she was diagnosed with HIV: “I wanted to see everybody—my family, a therapist, a nutritionist, a dentist,” she recalls. But some mixture of human contact and reliable information will probably come in handy during the first days and weeks after you test positive.
The good news is that it’s a well-trodden path. Twenty-five years into the epidemic, you can count on the time-tested experiences of those who have been there, vast improvements in treatment and, in most areas, a network of services.
Still, HIV experts advise taking it easy. “Don’t worry about the technical stuff right now,” says Drew de Los Reyes, assistant director of HIV prevention and education at Gay Men’s Health Crisis (GMHC) in New York City. “First, figure out how you’ll take care of yourself in the short term.”
Tell Someone You Trust
For some people, family can be a great source of support from the start—Cooper’s sisters brought her home-cooked meals when she was hospitalized (see “Helping Hands"). For others, friends may be the ones to go to when you’re feeling fragile, confused or upset about your new diagnosis.
You can’t predict exactly how people will respond to your news, but you may have a sense of who will be there for you. Counselors suggest choosing the one or two people you think might best handle the news. Maybe it’s someone who knew you were getting an HIV test or happens to know about HIV.
With or without the support of friends and family, you might consider joining a group specifically for people who were just diagnosed with HIV, not only to talk but to find out what’s up with everybody else. Says Cooper of the group she joined at her Brooklyn church, “Listening to other people’s problems, learning what I can do better—that was the main part.”
AIDS service organizations (ASOs) also run support groups. And they may be your best resources for getting answers to questions about HIV and for connecting you with everything from childcare to advice on treatment, housing and finances. (You can find an ASO by using the AIDS Services Directory.)
One-on-one counseling can be helpful too. If that sounds more up your alley than being part of a group (and your insurance will cover it or you can swing the fee), ask your doctor, an ASO or a positive friend if they know of a counselor who is knowledgeable about HIV.
Find a Doctor
As soon as possible after your HIV diagnosis, it’s important to see a doctor to find out how the virus is affecting your body, whether you’ll need treatment anytime soon and what else may be going on. You’ll take some blood tests and talk about non-HIV health matters too.
So how do you find a doctor? Sometimes the best referrals come from other people with HIV. “Find a positive friend who seems happy with their care,” says Antonio Urbina, MD, medical director of HIV/AIDS education and training at Catholic Medical Center in New York City. “Has their care been consistent and compassionate?”
Or if you’re currently seeing a doctor or nurse practitioner you like, ask for a referral to someone with experience in HIV care. ASOs can also suggest someone, and the American Academy of HIV Medicine (AAHIVM) has an online list of physicians who specialize in the care and management of HIV at www.aahivm.
WHAT MAKES A GOOD DOCTOR?
Some people interview several doctors before signing on as a patient. After you meet with one for the first time, ask yourself these questions to decide whether you’ve found the right one
Does my doctor have experience with HIV?
Studies show that the number of HIV positive patients a doctor has treated in the past contributes directly to the quality of care. “Don’t compromise on your health with a provider who lacks HIV experience,” says Antonio Urbina MD.
Did I feel comfortable?
Can you picture yourself talking openly with your doctor about the personal details of your health—including touchy things, like drug use, diarrhea or depression? “The fit is an emotional one, and personality matters,” says Lloyd Bailey, MD, who treats HIV patients in the Spellman Clinic at New York City’s St. Vincent’s Midtown Hospital.
Did I get my questions answered?
You have some important health decisions to make—so you’ll need all the facts. It’s your right to get clear, specific answers to your questions. Also: Is this doctor paying attention to you?
Is my doctor available enough?
A doctor who can only schedule appointments three or more months in advance may not be available in a pinch. But some doctors welcome communication between appointments. “I encourage my patients to keep in touch with me via e-mail,” says Dr. Bailey. “It allows me to be more available for problems that aren’t urgent.”
Does he or she address my whole health—not just my HIV?
If you’re diabetic, coinfected with hepatitis C or have bouts of depression, for instance, your provider should consider all of these problems to make sure nothing is being neglected and that your treatments don’t interfere with one another.
HELPING HANDS Reaching out to her family was the easy part
Shirlene Cooper, 43 diagnosed 1997
On finding out she was HIV positive: It was devastating. But it was no surprise to me. I was just skeptical about coming out to my family. I thought they were going to be more upset about it than me.
On telling them: I talked to my sister Joan first: She felt bad about it, but she didn’t show any response. All my sisters were there for me. I couldn’t ask for better. They were bringing me my favorite foods, handling my business, making sure I was OK, morally and spiritually. I believe they had a lot to do with me hanging on.
On deciding to take care of herself:Some just go out and get high. Other folks say, “I want to live—and I’m going to find out how I can live as long as I can.” I said, “I’m going to live.”
On support groups: It’s good to hear stories of people who have been through hell and back. It makes me think I can get back on my feet.
On how much harder it was back then:It could be depressing because each week [in my support group], one of the girls would pass on. Now I know I’m one of the lucky ones.
On loving her doctor:My doctor calls me even when I don’t have an appointment, just to see if I’m OK. If I have any problems, I can come in and see him. He’s amazing. On life:I feel great. Even my relationship with my daughter is great.