Who's Afraid of HIV?

Antiretroviral medications. Viral loads. Genotypic and phenotypic assays. CD4-cell counts. There is a lot of medical terminology and processes that people who are newly diagnosed with an HIV infection can suddenly find themselves facing. But HIV is far more than just a physical, clinical disease. Learning that you are HIV-positive can have an effect on nearly every aspect of your life, and it is possible that the advice you get from your physician or case manager will not fully prepare you for some of the challenges and choices ahead. HIV Plus talked with a group of HIV caregivers, educators, and even people who carry the virus themselves to pull together advice on how to come to terms with HIV, warn about possibly unforeseen roadblocks, and offer tips on how to address common issues that may crop up in the first weeks and months after being told you are HIV-positive. Set Your Own Pace One of the first basic concepts that newly diagnosed people should be made aware of is that there is no road map to addressing the physical and emotional impact of the disease, says Timothy Critzer, author of the book I Just Found Out I Have HIV'Now What? and its accompanying workbook. Furthermore, treading in the exact footsteps of an HIV-positive peer or blindly heeding the advice offered by your care team without first determining how you feel about those moves can do more harm than good. 'If you push people to do something or talk about something or think about something and they're not ready for it, you can end up pushing them away and making matters worse,' notes Quincy Greene, an early intervention specialist at Philadelphia Community Health Alternatives. 'If they're ready, they'll deal with it. What we say to these people is, 'Here's what we can offer you. When you're ready, we'll be here.' ' Deciding on Disclosure Setting your own pace is particularly important in deciding if and when to tell other people about being infected'and whom to tell. As is the case with so many other aspects of HIV, there is no right or wrong decision about how to handle disclosure. 'I have friends who are closeted about their status, and I understand that. I spent nine years not talking about it myself,' says Shawn Decker of Charlottesville, Va., a 28-year-old hemophiliac who found out he was HIV-positive when he was 11. 'A lot of times, people don't want to tell friends and family because of fear of rejection or fear of changing the dynamics of the relationships with loved ones. You can't force someone to do that unless they're really ready to.' In his workbook, Critzer recommends making a list of each person you want to tell, why you want to tell them, and how you think they will react to the news. 'Be honest with yourself to help avoid any uncomfortable surprises,' he writes. It is even OK to keep your serostatus a secret if that is the most comfortable solution, says Richard Hutt, RN, of the New York University School of Medicine's Center for AIDS Research. But newly diagnosed people should realize that this approach can come with a trade-off in not having a strong support network in place. 'And AIDS is an enormous load for anyone to take on alone,' Hutt notes. See Your Doctor Where most health care providers and HIV experts break with the at-your-own-pace rule is to urge newly diagnosed individuals to immediately see an HIV doctor to get initial lab work done'whether they feel ready to do so or not. 'That way, at least they'll have a good starting point to open up the discussion of what to do next,' Hutt says. But establishing this initial set of data'known as baseline readings'does not necessarily mean a person has to plunge into regular doctor visits if not yet prepared for them, Critzer says. It also does not automatically mean you will have to start anti-HIV drug therapy. Antiretroviral medications often are not recommended for newly diagnosed patients for months or even years if CD4-cell counts remain high and viral loads stay low. Seek Out Support An important early step for people who have learned they are infected with HIV is to rely on or begin to develop a support network, whether that is leaning on friends or family members or turning to counseling and support services available through AIDS groups and other organizations, says Scott Cook, director of community services for Chicago's Howard Brown Health Center. But it might be best to avoid rushing to join a formal HIV support group, particularly groups not specifically tailored for new HIVers, Hutt advises. These groups can be overwhelming'or even terrifying'for people who are still grappling with their feelings over becoming infected. Critzer says his first support group experience was a setback for him. 'The stories were horrifying,' he explains. 'If you're still in crisis mode, you'll take what they say and project your own future upon it.' Many AIDS service organizations, like Philadelphia Community Health Alternatives and Howard Brown, instead direct new HIV-positive clients only to groups created for and attended by other individuals who have only recently been diagnosed. Seattle's Project Poz goes one step further, pairing up newly diagnosed gay and bisexual men with those who have been infected for at least one year for one-on-one peer support. 'Some men feel unable to discuss issues with a professional for fear of judgment or a lack of empathy,' says T. Frazzitta, programming manager and facilitator-coordinator of Seattle AIDS Support Group, which runs Project Poz. 'They want to speak with someone who understands what it's like to be in their shoes.' Avoid Information Overload The same emotional setbacks that can stem from joining formal support groups too quickly can also result from blindly seeking out information about HIV on the Internet, Hutt says. 'The amount of information out there is mind-blowing, and not all of it is accurate,' he points out. 'If someone is interested in learning more about HIV on the Internet, I definitely steer people toward reliable, research-based information rather than anecdotal-type stuff that can be too intimidating.' Critzer agrees: 'When your mind is taking in everything it can find and milling it for every bit of drama and terror, you don't want to be feeding it with too much information.' However, an upside to the Internet is its ability to provide connections with other HIV-positive people through settings like chat rooms and bulletin boards, says Brian Morgan, an AIDS educator from Columbia, S.C., who learned he was HIV-positive in 1998. 'You can make friends with other people with HIV to sort of work through some of your feelings with other people who have gone through the same things.' Talk About Sex and Relationships Surprisingly, the last thing many newly diagnosed patients want to think about'much less talk about'is sex, even though most new HIVers were sexually active prior to being diagnosed, Hutt says. Avoiding sex, even to the point of pledging lasting abstinence, is a natural reaction to being given an overwhelming piece of news, especially for people who were infected through sexual activity. 'But I do touch on the idea that sex will become a part of their lives again,' he adds, 'so I at least plant the idea that their sex lives don't have to end.' While sex may be put on the back burner for a while, relationship concerns tend to surface right away, says Mark Hodar, HIV and STD services manager at Howard Brown. Those already in relationships are fearful that they may have infected their partners. Others worry that their partners will leave them. Single men and women may envision a lifetime of rejection, devoid of romance and love. For some people, those fears never subside, and Morgan admits he still struggles with them himself. In the nearly five years since he has been diagnosed, he has not had a serious relationship. Others, like Decker, eventually decide to throw themselves back into the dating pool. By doing so, he met his HIV-negative partner in 1998, and they've now been together five years. 'What sort of made me feel better about dating,' Decker says, 'was realizing that there will be some people who won't date me because of HIV'but also that not everyone was going to do that. And knowing that not everyone is going to turn and run away is a very good thing.' Forgive Yourself Perhaps the most difficult'but most essential'step any HIV-positive person has to make is to 'forgive oneself' for contracting the virus, Critzer advises. Because of the stigma attached to HIV infection, it is natural at first to feel angry, ashamed, or guilty'or even to believe that you deserve to be infected because of how you contracted the virus, he says. But harboring those feelings for months on end may be a sign that you need to seek professional counseling help. Completing the forgiveness process may not be quick, and Critzer admits it took him nearly four years to fully come to peace with HIV. But, he says, it is important to start early on to confront feelings of blame, shame, and guilt before they turn into anger, hate, and harmful behaviors like substance abuse, unprotected sex, isolation, or even violent or destructive acts directed at yourself or others. 'Blaming yourself in the present only causes you continuing pain and anguish along with ever-dangerous anger,' Critzer writes in his book. 'Accept the blame, forgive yourself, and begin living in the present.' Learning More Some individuals who talked with HIV Plus for this article work continually to help people who are newly diagnosed to develop coping skills. Timothy Critzer, Shawn Decker, and Brian Morgan operate personal Internet sites about their experiences living with HIV: ' Critzer's 'Be Healthy for Life' site can be accessed at https://www.behealthyforlife.com. ' Decker's 'My Pet Virus' site can be accessed at https://www.mypetvirus.com. ' Morgan's 'Living With HIV' site can be accessed at https://community-2.webtv.net/BDMHIVPOS/LIVINGWITHHIVBrians/index.html.