Getting an HIV or AIDS diagnosis is hard enough, but it's almost harder to inform the people you love.
If you're the caregiver of someone who's just been diagnosed with HIV or AIDS, you can help the person through this difficult time by helping talk to friends and family. Together, you should discuss who needs to know about the HIV diagnosis, and when and how to bring up this sensitive topic with others.
"Family members are kind of at a loss. Sometimes people who are getting the diagnosis feel at a loss too," says Lisa Cox, PhD, LCSW, an associate professor of social work at the Richard Stockton College of New Jersey. As a caregiver, she says, you have to be there to support your loved one, and help them plan what to say and who to tell.
Telling About an HIV Diagnosis: How to Start
First, consider your loved one's position in the family, says Cox. "If you're a single mom, that's different than if you're the oldest child in a family … it just depends on your age, your achieved status in life, your background. All of those pieces need to be assessed to really determine where to start," Cox says. Some other factors to consider:
Explaining the illness. Your loved one may need help explaining how AIDS and HIV can or can't be transmitted, in which case you'll need to do your research first. Reassure others that they can't catch the illness by hugging or touching your loved one, or sharing food or drinks. Take precautions around the house to reduce exposure to harmful body fluids — like blood — that can transmit the virus.
Everyone will feel more comfortable when they're better educated about the disease.
Timing. There will never be a perfect time to tell friends and family about your loved one's illness, rather, the right time is when the person with HIV feels ready for it. He may prefer to wait until after an HIV treatment plan has been devised so there is more information to share. Encourage your loved one to give himself some time to accept the news and prepare for others' reactions.
Your loved one will also have to decide whether he prefers to tell people individually or as a group — and there's no right or wrong way to do it. You should help devise a plan that's most comfortable for your loved one — if he doesn't want to have to deal with repeating the information over and over, a group setting might be best. If you anticipate that one or two particular family members may have a difficult time accepting the news, perhaps they should be told separately so they can deal with their reactions in private. It's also a good idea to tell children separately from adults, as the diagnosis will need to be explained a bit differently.
Getting treatment. Breaking the news to family, friends, and coworkers is stressful, but you can't let that delay your loved one's treatment. "Getting people into proper medical care early on is one of the most important things that family members can do," says Cox. So make sure that your loved one has prompt appointments, and a treatment plan is started right away.
Getting started on a treatment plan will also help reduce anxiety for friends and family members since once treatment has begun, less of the virus will be in the blood, and the risk of transmitting the virus is reduced.
Talking About an HIV Diagnosis: Who to Tell
Anyone who is now, or could have been, at risk of contracting the disease from your loved one should be informed. This includes all of person's doctors, nurses, dentists, and other health-care professionals.
Family members should also be informed if your loved one consents, and will probably want to offer help and support throughout this time.
Telling close friends should be up to your loved one's discretion and level of comfort, but anyone who might be at risk — especially any sexual partners — should be notified. If there is any chance that your loved one may be injured or start bleeding around any of these friends, they'll need to be made aware of the situation so they know to take precautions.
Deciding whether to tell people at work may be difficult. The decision is up to your loved one, but he should consider telling his manager, particularly because he may have to miss work due to doctor's visits, medication needs, and illness. The Americans with Disabilities Act prevents an employer from firing your loved one because of HIV or AIDS.
Everyone's needs are different, so you can't predict what your loved one will want or need you to do. But if you offer plenty of love and support, and help when your loved one asks for it, you'll make the difficult period after an HIV diagnosis an easier one for that person.