Disclosure and HIV
September 15, 2015
In the US, people with disabilities, including HIV, are protected from job discrimination under the Americans with Disabilities Act (ADA). However, you should think carefully before disclosing your HIV status at work. You do not have to tell your employer that you are living with HIV. If you have not had any HIV-related symptoms or illnesses and are not on medications that are affecting your job performance, there is probably no need to tell.
If HIV or your medications are interfering with your ability to work, it may be a good idea to privately disclose your status to your boss. You can ask for an adjustment in your schedule or workload so that you can continue to do your job. Because the law regards a person living with HIV as a disabled person, your employer is required to reasonably accommodate your needs if you are otherwise qualified to perform the essential duties of the job.
If you are planning to disclose at work for employee or benefits purposes (like reasonable accommodation, insurance, disability, or medical leave), contact an employee benefits counselor or an HIV or legal advocate before disclosing. For more information, see our article on Understanding Your Rights and Responsibilities in the Workplace in the US.
Women often choose to disclose their status to close friends and family members whom they trust. For many, telling those closest to them provides them with both emotional and practical support.
Some people decide to become more public and use their stories to advocate for others with the government or in the media. Others may disclose for educational purposes to neighbors, community and religious groups, schools, other people living with HIV, or healthcare providers. Many women find a sense of purpose and increased self-esteem by telling their story.
"For the first time, I had experienced stigma but it would not be the last. Stigma had wreaked so much havoc in my life that I could not breathe. Every step I took to piece my life back together, stigma would be waiting. The fear of being alone and unloved was something I could not bear… I would live for years without saying a word. As time went by, I moved into a supportive housing complex with people like me. I began to learn through them, how to really come to terms with my diagnosis. I saw life and laughter and although there were some who lost everything, they were still happy. It became contagious. I wanted that kind of life. However, it would entail the sharing of my story. So one day I did just that at an event where I would share to hundreds of bike riders. For the first time in my life, I felt peace and freedom. I received love, hugs and well wishes from people who were not afraid to touch me. It moved me to continue to share my story until this very day." (from "Why Even Share?" 12/5/12, msplusamerica2011)
You may want to consider how much of your story you are ready to tell. Many people will ask you how you became infected. If you decide not to share that information, have a reply ready such as, "does it really matter?" or simply state that you are not ready to talk about that.
For moms considering telling their children, it is important to ask yourself why you want to tell them:
Children can react to the news of HIV in the family in many different ways. Older kids may be upset that you kept a secret from them. Younger children may just want to go back to their toys. Partial truths can be helpful when telling children. You may decide only to tell them as much as you consider appropriate for their age.
It is important to remember that kids need support, too. If you can, give them the name of another adult they can talk to, perhaps a family member or friend they can trust. Several books are available that deal with the issue of disclosure to children. A good place to start is Let's Talk ... Children, Families and HIV. Also see The Well Project's Talking with Your Children about Your HIV Status or Your Children's Status.
There are some good reasons to tell people that you have HIV:
In close relationships, studies show that living with a secret, such as HIV, can be more emotionally harmful than the rejection that could result from disclosure. Many women who have kept a secret for a long time feel a sense of relief after telling.
However, telling other people that you have HIV can also have downsides. It is important to think carefully about whom you tell. Remember that once you disclose, you cannot take it back. ASOs and health care clinics can offer resources to guide you through the disclosure process.
This article was provided by The Well Project. Visit The Well Project's Web site to learn more about their resources and initiatives for women living with HIV. The Well Project shares its content with TheBody.com to ensure all people have access to the highest quality treatment information available. The Well Project receives no advertising revenue from TheBody.com or the advertisers on this site. No advertiser on this site has any editorial input into The Well Project's content.
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