Prevention for Positives: Dealing With Disclosure
At AIDS Survival Project's THRIVE! Weekend workshop, one of the topics that generates the most discussion is disclosure, or telling others about your HIV status. For those of us who are HIV positive, disclosure is a daily issue that we must wrestle with every time we meet someone new. Who deserves to know this personal information about our health? Who in our lives really needs to know? Isn't it our right to decide not to tell anyone? Why would we want to share this with anyone? And when is the right time to approach those people we do decide to tell? There are no definitive right or wrong answers for these questions; each person has to decide these things for him or herself. In this article, we will share some of the ideas that have come up during our Disclosure presentation, in order to help you make your own decisions on when to disclose and when not to disclose.
Upon finding out that they are HIV positive, many people choose not to disclose to anyone at first; others feel the need to disclose to loved ones right away. Some people get tested anonymously and do not feel the need to tell anyone else about their status in the beginning. For some, they are in a period of shock or denial after discovering this news and may not be ready to deal with it. For others, a conscious decision is made that telling others would not be in their best interest. And some folks just don't feel there is anyone in their lives who would be able to handle such upsetting news.
When people are ready to disclose, the first person they share the news with is often their doctor or health care provider. It is important once you have been diagnosed to get blood tests such as a CD4 count or a viral load to determine how far the virus has progressed in your system. Having a care provider on your side will help to give you an objective view of not only what the virus is doing to your personal health, but also how you can prevent passing it on to others. Having a doctor help you sort out fact from fiction can give you the foundation of knowledge you need to help explain HIV to those loved ones in your life who don't really understand what's going on with you.
Don't forget that you also have many other resources, such as ASP's Treatment Resource Center, or some of the more reliable Internet sites, like the CDC Web site (www.cdc.gov) or The Body (www.thebody.com), where you can do your own research about HIV, so you will be ready to answer any questions that people may ask you. Knowledge is power, and disclosing to others is always easier if you more fully understand the subject you are bringing up with them. They will also be less inclined to panic about HIV if they can see that you are informed about the subject and are taking the first steps to take care of yourself.
After your care provider, there are many people in your life you may choose to tell (or not tell) about the HIV. Some people decide to "come out" and tell everyone. Some pick and choose who needs to know and who doesn't. Does the cashier at Kroger really need to know? How about your dental hygienist? The roommate you can't stand? Remember that only people who come in contact with your blood, semen, vaginal fluid or breast milk can have even a remote chance of being infected by you. There is no medical or health reason for telling anyone else. Your dentist and his hygienist, for example, might come in contact with your blood, and HIV might impact the health of your teeth and gums, so informing them might be a good idea, although they should be taking universal precautions (wearing a mask and gloves) with all their patients, anyway. The cashier, however, has no good reason to know your business, unless you decide she does. And your roommate? Well, he can't get HIV from eating off your plates or using the toilet after you, so unless you think he will "freak out" if he finds out from some other source, there really is no need to tell him.
However, while there may not be a need to tell everyone from a health standpoint, there may be good reasons why you would want to disclose to the important people in your life. These disclosure decisions can be put into one of three main categories: 1) your family and friends, 2) people you work with, and 3) potential sex partners. Let's examine these three groups.
Why tell your family and friends at all? Most people will simply say "for support." Dealing with a major illness like HIV in your life will usually be easier if you have someone who you know will be there for you if you get sick or need a shoulder to cry on. You may think you can handle it all by yourself, or that no one in your family would understand, but this is one time when you need to sit down and really examine if the things you are telling yourself are the truth.
Do you really want your parents to find out from some strange doctor in the hospital emergency room that you have known about your HIV for several years and have said nothing to them about it? How do you think this would make them feel? Don't you want your family and friends on your side helping you through this difficult phase of your life? If you had cancer instead of HIV, would you tell them? Why is HIV different? Is there shame or guilt attached to having HIV? Will bringing up the subject of HIV also bring up the subject of sexuality or being gay? Is the stress of keeping all this trauma away from your family really worth it, or would it be a relief to get it all off your chest? Again, there are no right or wrong answers here; only you can decide what will work for you.
Sometimes, it's best to start with just one family member or a best friend. You might want to tell someone you trust to keep it quiet. Often, though, telling your friend news of this magnitude may be difficult for them to handle, and they may feel like they just have to tell someone else for their own support. If you tell one person in your family, you have to consider that your sister might confide in your brother, who will tell your mom, and before you know it, your whole family is giving you "that look."
And picking the best time and place is very important. Telling your family at the family reunion or in the middle of Thanksgiving dinner or at church in front of the congregation will certainly be dramatic, but will it be in your best interest? Pulling your family members aside for a private talk will not only help to give them a "safe space" to hear the news and ask you questions, but will also help keep unnecessary drama to a minimum. Again, having some information you copied at ASP or something you downloaded from the CDC Web site in hand wouldn't hurt here, either.
Be especially careful when disclosing to young children. They may not be ready to understand HIV or the details about how you got the disease. Are you prepared to answer all their questions? Maybe you could do it with a counselor or doctor attending, so they can help you explain what the kids don't understand and help you decide what they can or cannot handle.
The second group you might need to disclose to is the people at work. Why would you want to tell your employer about your HIV? It is unlikely that you can infect the people you work with, unless they come into contact with your bodily fluids. Some people believe that a waiter at a restaurant or a nurse at a hospital would need to disclose, but these employees do not put people at risk for getting HIV just by doing their jobs, so there is no actual health reason that makes disclosure necessary. And in the state of Georgia, an employee can be fired from their job for pretty much any reason that isn't blatant discrimination. Most employers can be pretty sneaky if they want to get rid of you; they can just claim there's a personality issue or that you aren't doing your work, and you will be out on the street. So why would you want to tell them?
Well, HIV is considered a disability, and the Americans with Disabilities Act protects people with HIV who become too disabled to work. To receive the protection it affords employees at the workplace, that employee would have to inform someone he works for -- most likely either his supervisor or someone in his personnel department -- that he has HIV. It would probably be a good idea to consult with an attorney before taking this step so you know what your rights and benefits under the ADA really are. And of course, it helps if you have a supervisor you can trust with such personal information. Just like with your family, once you tell someone at work, everyone at work is liable to know before too long if the person you tell has trouble being discreet. You will have to decide if the benefits of telling your employer outweigh the danger of losing your job.
As far as the final group is concerned, potential sex partners actually do have some risk of contracting HIV from you if they come into contact with your semen or vaginal fluid. Don't forget that preseminal fluid, also called "pre-cum," contains HIV as well, so fooling around with someone who "pulls out" at the last minute is still risky. Nevertheless, there are still many people who do not disclose before having sex with others. Some folks have the attitude that everyone is responsible for their own safety, and "if the other guy doesn't bring up HIV, it's not my problem."
Many people don't realize, however, that not disclosing that you are HIV positive to someone you have sex with is a felony in the state of Georgia, even if you use a condom. Many people don't consider oral sex to be "real" sex, or don't think it can spread HIV. But if you have oral sex with someone who has cuts, sores or bleeding in their mouth (if the giver) or on their genitals (if the receiver), there is some risk, however small, of infecting the other person with HIV.
Also, people who are positive and having sex with other positives often believe that condoms, as well as disclosure, are unnecessary. But there does seem to be some concern by most physicians that resistance to HIV meds can be passed on by exposure to other strains of HIV. In other words, if I have sex with you, and you catch my strain of HIV, you might become resistant to the same meds that I am already resistant to, even if you haven't taken them yet.
For these reasons, some folks feel it is absolutely necessary to disclose to anyone they are going to have any kind of sex with. It may be difficult to have that conversation about being HIV positive in a bar, but some folks don't want to deal with someone who can't handle the HIV, so they talk about the subject early to "screen out" people who might reject them. Others don't want HIV to be the first thing a person knows about them and might wait until they have dated the person for a while before they tell them in private before sleeping with them.
Everyone is different in this regard. I know folks that have never told anyone their status, even when they sleep with them, and are on the "down low." And there are people at the other end of the spectrum, who have no problem advertising their positive status, whether that means telling someone in person or stating that they are HIV positive in personals and chat rooms on the Internet, so anyone who contacts them will already know about their HIV up front. The people who avoid disclosing to sex partners usually admit it's because they don't want to deal with the rejection. It is important to remember, though, that if someone has shown interest in you, then rejects you when they find out you are positive, they are really rejecting the HIV, and are obviously not in a good place to be having sex or a relationship with you in the first place.
Disclosure may seem like a chore at times, but it is really a gift. You are sharing a personal truth with someone you care about, and although it may be difficult for them to hear, you may both grow closer in the future as a result. You may run the risk of rejection, but it is always better to know who is on your side and who isn't. If you are facing disclosure challenges, don't forget that you have resources available at ASP to help you. Peer counselors are on duty every weekday to help give you feedback or even role-play what you might want to say. And the Disclosure presentation is a part of every THRIVE! Weekend and generates a lot of lively discussion that can be a great inspiration.
Also, you may not be aware of ASP's newest program, Healthy Relationships, where HIV-positive group members with common backgrounds share their experiences to learn how to deal with the stress of disclosure and build healthier, safer relationships with others. The next group of evening sessions will be offered in January, March and May. Check it out at our Web site!
This article was provided by AIDS Survival Project. It is a part of the publication Survival News.
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