Testing Positive

by Daniel Scheffler

EDGE Media Network Contributor

Monday September 29, 2014

Testing Positive
  (Source:Thinkstock by Getty Images)

So you've tested positive. Now what? The National Institute of Health recommends that you first "Don't panic!" After you've calmed down and figured out what you know and need to know, the next most important step is to "find a support system."

No matter how much family, friends or clergy may offer support and love, such a life-changing experience presents a unique set of circumstances.

"Receiving a diagnosis of any serious illness can be difficult. Some people newly diagnosed with a health condition find that counseling and peer group support help them to better cope" said Diane Hepps, a spokesperson for the New York City Department of Health and Mental Hygiene.

Only like-minded people can fully understand what you're going through. No matter how many advances science has made how much HIV has become a manageable condition, for 30 years HIV had been associated with death, stigma and discrimination and many other negative ramifications.

Opening up to, and getting feedback from, others who share your diagnosis in a controlled setting can help you cope with constantly monitoring T-cells viral load, meds and infections. If you're coming to grips with testing positive, your therapist may offer a support group, and most HIV service agencies offer peer support groups for free.

"I had people staring at me in disbelief, being angry at the messenger, even got punched once, others will totally blanked out and stare in space, laugh or just simply walk away" added Luis Freddy Molano, vice-president of Infectious Diseases and LGTBQ Programs and Services in New York. "It is crucial to convey that someone does care, that this is something that could be managed and that there is a team to work with the client. We just need to start when the patient is ready."

"The best place for reassurance is a support group," asserted Mark S. King, author of www.MyFabulousDisease.com.

Finding Online Groups
(Source: Thinkstock by Getty Images)

Finding Online Groups

"My partner never doubted my love and respect," said Steve, whose partner seroconverted three years into their 12-year relationship. "He never had to accuse me of judging him, because I never did. But even so, we both knew that my empathy was limited by my never having seroconverted. Even so, he was wary about joining a peer group because he was afraid it would turn into one long 'bitch session.'"

His partner eventually decided to join a group at GMHC; the major HIV/AIDS service organization in New York City. "Although he did complain about some the members," Steve related, "it ended up something he looked forward to to get things off his chest. And honestly, it helped me, too, because it took some of the burden off of me."

Social groups for poz gay men, though, are becoming more popular than ever, For King, that's "a sure sign that gay men are more equipped to live with their virus and can enjoy themselves in the process."

On the Internet, it's possible to ask questions and join group chats and communities. King lists Poz.com, TheBody.com, and poziam.com as good places to start, as well as Facebook groups. There's even Volttage.com, a hookup site.

The Internet has bridged the gap for people isolated in rural areas especially, added Chris Quin, an HIV nurse in Essex, England. Websites like Supportgroups.com offer a comprehensive listing of oneline support groups.

Peer-to-Peer Groups
(Source: Thinkstock by Getty Images)

Peer-to-Peer Groups

Agencies like New York City's health department have begun creating peer-based workshops led by HIV-positive people like "The Positive Life Workshop."

Since the AIDS epidemic began in the early '80s, one of biggest changes has been making sure newly diagnosed people get the message that they have a future. "In the past," Quin noted, "we just pushed condoms. Now we can look at life going forward even family planning along with treatment plans."

AIDS Foundation Houston gives these guidelines for those newly diagnosed:

• Don't panic. Breathe.

• Make a list of questions. You will probably have some time between when you are diagnosed and when you have your first visit with a healthcare provider. Making a list is a good way to organize your thoughts. No question is too vague, too detailed, or unimportant. You may some find some answers yourself.

• Spend some time figuring out "HIV-positive" means. Websites, printed materials from testing center and healthcare providers can help.

• Find a support system. If you are not ready to tell other people about your HIV diagnosis, look up community resources and professional organizations that offer support groups for the newly diagnosed or counseling.

• Find the right healthcare provider. This person will be monitoring your lab results, developing a treatment plan, advising you on health-related matters, and in general caring for your health and well being. It's important that it's someone you feel comfortable with so you can maintain an open and honest dialogue.

• Your first appointment can cause anxiety. Remember to bring your list of questions. Be open and honest. Familiarize yourself with your test results.

• Start to consider when and to whom you want to disclose your status. This may be the hardest part about becoming infected with HIV. Remember that you don't have to tell everyone or everyone all at once. That said, you should disclose your HIV status to your healthcare providers, sexual partners and anyone else at high risk for exposure.

Based between New York and Cape Town, Daniel Scheffler writes about socio political and travel matters and is working on a memoir. Follow him on Twitter @danielscheffler.

Living Well with HIV

This story is part of our special report titled Living Well with HIV. Want to read more? Here's the full list.