The best steps a person newly diagnosed with HIV can take are down a well-worn path that thousands of others have successfully walked.
When I first found out, I was devastated,” says “45 years young” Nicole Guide of Brooklyn. “That was 20 years ago,” she recalls, “and I thought my life was over. I went through a lot of different feelings, including shame and anger, and engaged in destructive behaviors. Then when I learned more about HIV and I got educated about the virus, I realized that agencies serving HIV-positive individuals, health care providers and medications could all restore me to better health. That’s where hope came in.”
It’s all about reaching out to others—a little human contact for support and some professional help to introduce you to the care you’ll need to keep you healthy for decades to come. Nearly 30 years into the HIV/AIDS epidemic, the best steps a person newly diagnosed with HIV can take are down a well-worn path that thousands of others have successfully walked.
Tell Someone You Trust
For some people, family can be a great source of support from the start. For others, friends might be the ones you go to when you’re feeling upset and confused about your new diagnosis. Sean Blake, 32, of New Hope, Pennsylvania, reached out to a friend who is an HIV-positive registered nurse in Philadelphia after he first received his HIV diagnosis three years ago. “He was just amazing. I felt so foolish for testing positive in this day and age, but he said that it was what I did going forward in terms of taking care of myself that mattered most. He also reminded me that HIV is manageable, and he was just so unbelievably supportive.”
Of course, it’s not easy to predict exactly how people will respond to your news—even if you’ve known them for years—and it’s not always clear whom to tell (see “To Tell or Not to Tell” on page 6). We suggest choosing one or two people you think might best handle the news.
Even if you have the support of friends and family, you might also consider joining a group specifically for people who were just diagnosed with HIV, to find out how others handled the news.
Guide, who now works as an HIV counselor and educator, remembers finding strength in talking with other people living with HIV in support groups. “The more I visited those groups,” she says, “the more I realized there’s no difference between being HIV positive and living with any other ailment. We’re just people.”
Many AIDS service organizations (ASOs)—search for one at directory.poz.com—offer support groups, along with other professional services, such as drug recovery programs and treatment education workshops, along with case management to help with legal, financial or housing obstacles that might be in your way. And for those who find comfort in online support, POZ’s very own community forums (forums.poz.com) are a popular destination for the newly diagnosed seeking words of wisdom and encouragement from other people living with HIV.
Find a Doctor
As soon as possible after your HIV diagnosis, it’s important to see a doctor who specializes in HIV care. This might be an HIV specialist you see in addition to your primary care doctor or a single doctor who can expertly treat your HIV and keep an eye on your overall health. The fact is, we now know that living a long and healthy life with HIV requires a lot more than simply monitoring your viral load and CD4 cell count—your whole health matters greatly.
So how do you find a doctor? Sometimes, the best referrals come from other people living with HIV. “My friend gave me a list of really great primary care doctors who knew a lot about HIV,” Blake says. “I took his list, looked for matches in my insurance company’s list of covered doctors and made an appointment with the one closest to me.”
If you’d prefer to stick with your current health care provider and you both agree that it’s best for you to also be seen by an HIV specialist, just ask for a referral. ASOs can also suggest someone, and the American Academy of HIV Medicine (aahivm.org) has an online list of physicians who specialize in the care of people living with HIV.
“I always tell people that HIV is not going to kill you unless you give up and let it,” Guide explains. “HIV is a disease like any other. If you work with it, you’ll be happy and healthy. Take your medication, go to the doctor and love yourself no matter what.”
Living with HIV doesn’t mean you have to go it alone. Numerous services are available to HIV-positive people. Some of these services might be available through your health care provider or clinic. In addition, a number of organizations can help you find what you need.
Check out the Health Services Directory to find a nearby AIDS service organization (directory.poz.com). You can also visit the community forums (forums.poz.com), an around-the-clock discussion area for people with HIV/AIDS, where you can learn from the experiences of others and get support. POZ Personals (personals.poz.com) is our online community for HIV-positive dating with more than 90,000 members.
Project Inform (800.822.7422) and Women Alive (800.554.4876) both offer professionally staffed and extremely supportive hotlines. Both are open Monday through Friday during business hours.
AIDSmeds, POZ’s online sister publication, offers clearly written, user-friendly information to explain the basics of HIV science and treatment. AIDSmeds.com.
The Well Project (888.616.9355) offers the latest information on HIV for women. The site includes fact sheets, clinical trial info, HIV-related events and how-to guides. thewellproject.org.
The Adolescent AIDS Program (718.882.0232) is a local and national resource for youth at risk for, or living with, HIV. adolescentaids.org.
The Center for HIV Law & Policy (212.430.6733) is a national legal and policy resource center for people with HIV and their advocates. Its resource bank can help you locate legal representation or advice. hivlawandpolicy.org.
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