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.
bidemi, Ijebu, 2012-12-23 11:22:14
Lately I discovered some symptoms, mainly oral thrush at the corner of my mouth that goes away after taking vitamin B2. I checked online to get information on possible causes of this online. One of the causes identified is HIV infection. Since then I have been down and often depressed. I noticed that my fiancee had oral thrush also first time few days ago. I am scared, could I have contracted HIV?
Hart, Fort Lauderdale, 2012-06-10 00:00:05
My reactive testing came on a bittersweet day, my favorite cousin bday. I sat in that room, realizing that I wasn't emotional nor surprise. It was a fact! However, I thought as top I was less likely! Nevertheless, I knew the choices that I made had put me in this position… My testing team was awesome. They provide unconditional understanding and assurance. With a best friend HIV+ 20 yrs and living well, I know that I would be fine. I will find out about my #s on another important day, my bday!
poz33012, Atlanta, Ga, 2012-03-30 13:47:47
im 24 i just found that i am positive i feel empty on the inside .i know my family will never want me to come around i dont even know if they will want me to even come see them my daughter will never get to see if her mother has anything to do with it if she finds out, it feels like there is nothing to live for any more, plz help me i dont know what to to do or where to go cause i know im goin to get kicked out when my roommate finds out !!!!
Michael Burks, springdale, 2012-03-01 17:29:12
For anyone in the Northwest Arkansas and Ft. Smith Arkansas area, There is a great source of strength in HIV Arkansas, a local non-profit organization that provides support and advocacy for people living with and affected by HIV and AIDS. You can reach us at 1-888-802-3332 or on the web at www.hivarkansas.org
I can tell you from my own experience, without a group of friends I would not be here today.
Carlos, , 2012-02-29 01:09:40
i just found out i had it the day before valentines day this year (2012) what a romantic gift i have to share....yeah right. It was also the day before i flew back home to visit my old fashioned mexican family in cali. I cried when she told me i tested reactive.....thats what she called it anyway. Here it is 2 weeks later and Im back home from my trip to cali. & i still havent told anyone. Im not sure what to do I guess Im scared and really dont have anyone to talk to.....I feel ashamed & lost.
Alan, Robertsville, Ohio., 2012-01-21 13:02:28
I just wanna say that all of your comments have made a effect on me. I was diganosed in August 18th, 2011. Its been 5 months since I got Hiv. I was shock when I found out because I was so young. I was only 19 years old. When I found out that I was postive I thought to myself why me. Im so young. I didnt know if I had full blowned Aids, am I gonna died. How am I gonna tell my family. Well the best way that I learn so far to deal with it is that stay strong, take care of yourself and exercise.
Anthony, Nashville, 2011-12-09 12:52:12
Hello everyone, I found out my + status last thursday on worlds aids day. I received the virus from my boyfriend of two years. I didn't know he was cheating on me. Many people have said that they would tried to hurt him but I don't have time for that. Myself and health are the most important right now. I'd like to encourage those who just found out to concentrate on yourself and your health. It also may help to speak with a PCP or HIV specialist b4 you tell friends and family. YOU WILL MAKE IT!
jnyct, new york, 2011-11-06 22:53:20
thank you, all, for sharing your stories and experiences. you have have given me the strength to finally seek both medical and emotional support to deal with my newly HIV diagnosis.
jd4, corpus christi tx, 2011-02-07 19:07:30
I am 22 years old and just found out im positive, im so numb right now i cant even begin to process what they just told me, I dont know what to do, the hardest thing for me is knowing how much my family is going to suffer when they find out. It really hurts so much Im scared, and have no one to talk to, i dont know what to do..please give me some advice.
Don Ware, Winters, TX, 2010-12-27 22:08:43
I tested positive on my 44th birthday. One month later I was diagnosed with AIDS.I soon found out I had been living with a mental illness my entire life. I went thru a hard time emotionally and physically but in the course of a year I have turned my entire outlook on life around. I feel alive for the for the first time in decades. I share evrything with friends family and all who will listen; posting my lab results on Facebook is now routine and I am now blogging since speaking at World AIDS Day
ERIC, PHOENIX, 2010-12-19 02:12:19
I found out on Nov 16,2010 and afirst i cried a lil bit but then i stoped and thought of my cousin that has hiv/aids since she was born and how she has inspired me, and it made me smile...but think at the sametime, this is not a bad thing it's not the end of the world, i have an awesome example that is still living today and still she seems to inspire me day by day, all i can do is live day to day and thank god for evey day that i am given. at peace and now learing to better my self..take care
lushess, , 2010-09-22 12:16:09
im scared i was test at 13 week i was neg by hiv guy i didnt know at time when he stuck needle in my fingure he had hiv after my test came back i was neg then he looks at me told me he has hiv and not only that he told me come back again in 6 weeks i been feeling ill and scared i also was told by someone he works with told me get tested for hep also plz help me what can i do if i come back pos after my test
kay, miami, 2010-03-01 12:15:47
PLEASE KNOW THAT THERE'S A GOD THAT KNOWS AND UNDERSTANDS! TRUST ME...BETTER YET TRUST HIM, FOR GOD SO LOVED THE WORLD THAT HE GAVE HIS ONLY BEGOTTEN SON,THAT WHO SO EVER BELIEVETH IN HIM SHALL NOT PERISH BUT HAVE EVERLASTING LIFE, WE'VE TRIED EVERYTHING ! NOW IT'S TIME TO TRY JESUS...REPENT(THAT MEANS TURNING AWAY FROM YOUR SINS) AND TURN TO GOD...YOU WILL...PROMISE...YOU WILL FIND REST !
Randy, Charleston, 2009-10-29 20:57:19
To all newly positive persons, I am new to this myself August 2009, it is not the end, meds are important, the right doctor is very important, and PATIENTS. The worst and best thing to do is tell only those whom must know, and go at it at a slow pace, one day at a time is so lame. Just pace yourself and do as we all should have, be more careful, exercise more, eat better and get rest and if possible relax some. Good luck to all and if anyone knows of life insurance for HIV+ please post.
Ernie Ramirez, Fresno, 2009-04-09 12:45:53
i am not hiv poz but my nephew was just diagnosised with hiv at 22. i am gay myself and will support him anyway i can. i just want to learn more to help my nephew. this breaks my heart but i know Life is not over for him but i need for him to know this. please help me learn more on what he needs to do and support groups he can go to, to help him understand this. either way he has my support....