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.
Get Connected 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.”
GET CONNECTED 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.
POZ.com 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 Mentor (mentor.poz.com) matches up HIV-positive people for peer-to-peer support, and POZ Personals (personals.poz.com) is our online community for HIV-positive dating with more than 90,000 members.
Hotlines 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.
Treatment AIDSmeds, POZ’s online sister publication, offers clearly written, user-friendly information to explain the basics of HIV science and treatment. AIDSmeds.com.
Women 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.
Youth The Adolescent AIDS Program (718.882.0232) is a local and national resource for youth at risk for, or living with, HIV. adolescentaids.org.
Legal Advice 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.
macdonald, johannesbourg, 2009-04-04 04:21:01
i went to have a pre nuptial hiv test in january and the result was positive, i could not believe it moreso when i read that the elisa test can be deceiving. However my cd4 count was 750, i then arrived to the conclution that i don't have the virus that the test is wrong so i went on to marry my girl friend she is negative.three weeks ago i had some rashes on my waist and groin and i went to the dr and he said its shingles and i had to take another hiv test and it came back +, please tell me what to do
imnotdone, richmond, 2009-03-10 00:21:35
FOUND OUT 5 MONTHS AGO. STILL CAN'T EXCEPT IT. NEED TO TALK TO SOMEONE THAT CAN RELATE.
Tom, Houston, 2009-02-15 00:29:29
50, divorced, out a year and half, been with four guys, one, a 1-nite stand, gave me syphilis. Found out I'm positive just before xmas. Depressed, Sux to be gay.
Ian, Vallejo, CA, 2009-02-14 21:02:39
I just found out I was HIV+ exactly 1 week ago. I was shocked, numb, in denial, angry and afraid. For the past week, i have been proactive. Talked to my friends whom i dearly trust. Its not the end of it yet.its a just the beginning of a new like. A great life. I have to me optimistic and encourage myself everytime i wake up in the morning. feel free to hit me up if you want to chat.thank you..God bless
bill, , 2009-02-04 13:04:00
my partner diagnosed hiv+ 2 weeks ago. it was shocking. he asked if i still love him. he said it'll be alright if i leave him now. i told him that i just can't abandon him and leave him alone. no matter what is happening, i love him. i'll support him forever. i'm now learning how to take care of him. i'll not stop making love with him (in a safe way). pls know that your love ones will support you all along too. don't panic and don't give up!
grateful, VA, 2009-01-02 16:04:16
Today I went to be tested with someone i have been dating that is postive we have been careful however i elected to be tested and i am so numb with how do i tell my family.. i want children how will his ever be.. but reading some of ur stories Lori inpaticualr has encouraged me I dont know what tommrow will bring but ill will take one day at a time and i am so grateful even knowing i am at peace i know u have not lead the safest life and grateful its not worse. i dont know what is but im alive
Yelly, Baltimore, 2008-12-30 13:15:58
Im 27 years old. The end of 2007 I told myself I will have a happy 2008 year, but instead 2008 is the worst year of my life! April of 08 I will never thought I would have this condition I am in now. Was shocked! Terribly cry my heart out!! Thinking I have nothing to live for. As time goes by it gets alittle better and gettin used to. I have family and friends whos there for me. I have a 5 year old daughter to live for. I still have alot of learning to do and alot of answers that I need to know.
Life Beyond, Columbus, 2008-12-10 03:55:32
I Found out exactly one week ago and I was shocked. It was supposed to be a routine checkup and I just added a routine STD test since it had been 4 months and I usually get test around then. I received the call while I was at work and Told over the phone. I'm still so shocked and feel emotionally locked. I can't help but look in the mirror and see something repulsive and ugly now...how does one go on...Can you even be truly happy again?
stunned, , 2008-11-20 18:58:27
I just found out im positive...i have no one to turn to...worst part of it is that when I went to the Dr for the results, she told me Im HIV+ and sent me out the door....im devistated
Randall, Louisville, 2008-11-09 00:07:21
My partner just found out 4 weeks ago. It's been hell...someone help.
jedmundson6873, Palm Springs, CA, 2008-10-29 15:49:01
I found out last Thursday that I am poz. I was also told that I have Syphilis and high blood pressure. I have been so overwhelmed. The doctor scolded me and told me that I would probraly die from smoking and drinking befor hiv....I felt so ashamed, and dirty, slutty, dysfunctional, alchoholic....i am lost and confused and everyone i talk to tells me the opposite of the last person...get on meds right away, stay off meds as long as you can...etc etc...
Jorge, , 2008-10-26 08:16:51
I found im positive a month ago, but still is very hard, im looking to people to talk about this or guys having the same experience if u use msn my email is ng23uio hotmail com please add me and lets share this experience
Justfoundout702, , 2008-10-19 21:18:54
I found out just 4 days ago that I am HIV Positive. I am in shock and completely overwhelmed. I don't know what to think, feel or say. I find myself completely numb. Yet I am angry at myself, sad and completely ashamed of myself. I don't know what to do. Only one person knows. I am so lost. Everything I read online only depresses me more. I did this to myself and I am the one to blame. Can anyone help me understand what is happening? Mentally I am having a very difficult time.Help!
Phillip, Louisville, 2008-10-10 13:51:54
I just got off the phone with my Dr, although I was sure because of my behavior that I would indeed test positive, That doesn't make it any easier when he says, " You tested Positive" Now I am just feeling regret, and shame and worry about how is this all going to play out? Where do I go from here ?
Lori, Peoria,IL, 2008-10-03 05:03:15
I found my status in 1989.I am writting the new ppl.To tell them that everything is shocking at first.I can relate to those who feel numb,as that is the way I felt.Over the years I learned alot about this disease.When I was diagnoised there was only one pill to take and that was AZT.Well it didn't work for me,because I got what they call Toxicemina.Not until 1996 did I get on a better treatment.I am now undectable.I had a son in 1987 and he is negative.I too was in the military.