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.
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.
Omar, Norfolk, VA, 2008-09-29 21:14:57
I'm a 21 yr old guy in the military. Just found out last week (tuesday) that I am HIV positive. One thing I will say is that having friends around is the best support one can have in a case like this. It is not the end, but only something you have to live with. Adjust to it and it will become easier and easier to understand. I still yet have my family to tell, but not for a while yet. There's so much going on in my life that I'm basically emotionally numb. Just live healthy!
Rob, near Charlottesville, VA, 2008-09-23 19:15:58
I literally just found out i was positive a few moments ago. I am completely numb. Shouldn't I be shocked or crying or something? I have no clue how I''m going to tell my family. What's worse, I have no health insurance. Now what?
Brian, San antonio, 2008-08-29 17:39:08
i found out and now my lover has left me im alone and im scared im 24 i still want to live my life the mental part of it is worse than anything
Darren, north bay, 2008-08-17 14:41:42
Hey guy i am a 21 year old in north bay ont. just found about a week ago that i am HIV +. just wondering how if there was anyone one else that is my age that found out that there where and how did you tell your family that you are.
I am just asking for help to tell my family that already disowned me???????
thanks you all
Russell, Huntington, 2008-08-04 15:47:28
I found out on Tuesday that I am positive. It was very overwhelming. I had a more thoughts in a few seconds than I could have ever imagined. I live with my family and Im not ready to tell them yet. I hope I don't have to tell them for a very long time. Im also not ready for a many members of the gay community to find out. It is like coming out all over again but with more shame. I hate that I have shame but Im sure that is common when someone is first diagnosed. Id love to talk to anyone.
Jose, , 2008-06-24 20:22:22
I found out a little over a year ago that I am positive and to this day it freaks me out. I can be having the best day of my life and for one split second the thought pops into my head and it the rest of my day goes to hell. i immediately start analyzing my life and get cold and scared and feel totally alone. even my best friends who know can't help me at that point. i wish i had someone to talk to, who knew what i was going through.
Eric, Portland, 2008-06-21 04:55:30
Two weeks ago I found out that I am HIV+. I find it difficult to admit my new status to myself and close friends. I can hear my own voice lower in volume as I utter the words, "I tested positive." I've been proactive, though, and have been trying to keep my head up. I found a doctor and have started eating healthier and exercising. In some senses, this has helped me to do the things I always knew I should be doing. I do feel a little alone, now, though -- much like I did when I first came out.
Brian, Bronx, 2008-06-17 19:23:31
I myself have just found out of my results as being HIV+. I am devastated because I know I have practice safe sex and this has happened. I am in a state of confusion wondering whom to tell including my parents, but now having a harder time to tell my close friend. At the same time , I have become depressed and yes I have claimed that I will not let this thing get the best of me. So now I am in a fight for my life.
Tony, , 2008-06-08 21:22:24
I just found out three days ago that I am now Positive. Broke up with my Boyfriend two weeks prior to this discover and am having major depression issues, not proud of it but I tried to kill myself. I knew my bf was Poz when we met, he was upfront and honest. I was so head over heals in love that I really didnt care, I thought this was the love of my life and would last a lifetime. I feel like my life is over. This is the first time in my life that I have not been in control of my emotions.
Ben, Ventura, 2008-05-14 21:47:04
I was diagnosed as HIV+ today. Needless to say, I have many emotions, thoughts, and ideas going through me. I am mostly scared and angry. I feel alone, vulnerable, and shame. I don't know how to tell my family.
Philip, Indianapolis, 2008-05-11 04:41:47
Within the past month, I have just been diagnosed with HIV. I had always been careful and tested regularly and was sure this test would come back negative. The shock has been overwhelming finding out it was positive. I even went for a second test somewhere else hoping for different results, but not. Having a hard time sleeping, dreams about telling and reactions, worried about work, and how i tell my mom and brothers and sisters and my ex lover. On a rollercoaster ups and downs of emotions.
Kyle, , 2008-04-21 00:12:07
Within the past month, I tested HIV+ as well as being diagnosed with Syphilis. I was given one shot of Penicillin in each hip and told that the rash would soon clear from my palms/soles of feet. Now, weeks later, I have seen improvement though neither palms or soles have cleared completely. I also find myself, as well as only 2 best friends I told, struggling with coming to terms with being HIV+. Any information you may provide to help adjustment into new lifestyle would be most appreciated.
CJ, SEATTLE, 2008-04-20 07:11:04
I just found out that I am Hiv+, having a hard time with accepting my status and its stigma..trying not to get overwhelmed with all the info on the web...and wanting to seek support locally. Plus, I also am having a hard time with my parents...and how to deal with them. I told them right after I found out. I am not that close to them. They are kind of the "redneck" ignorant type...any help would be greatly appreciated. I am a 34y.o first year grad student in counseling psych..