42, Brooklyn, NY
I thinkit’s hardest to disclose to family, because they are supposed to loveyou unconditionally and accept you, and the idea that they might rejectyou hurts. I felt like I didn’t have a choice. I was diagnosed withHIV, tuberculosis and cervical cancer at the same time. I had to tellsomeone in case they had to bury me, and my six sisters and my daughter(Lamea, now 24) were all I had left. I was on drugs and had been in and out of prisonsince 1978. I had known I must be positive when my 2-year-old son diedof AIDS in 1995, but I didn’t get tested. I didn’t want to know. AfterI tested positive, I cleaned up my act, and now I’m a communityorganizer for New York City AIDS Housing Network. My family was verysupportive, and that is a big reason I’m still here. Disclosure ishard, and not everyone’s family will be as supportive as mine; buteveryone should have their family’s help—and you don’t know what theywill think until you tellthem.
—As told to Lucile Scott
Shirlene’s Five Disclosure Tips
1. Get Ready
Ijust told myself I’m not going to feel bad about what I have or aboutmyself. I think everyone should see a therapist to help decide how,when [and if] you should disclose to your loved ones. You feel nervousand confused, and just talking to someone in a neutral zone who canmake you relax and help you think through things really helps. Also,brainstorm and talk to others about how they disclosed.
Chat about disclosure with other HIVers in Positive Images’ online chat room, www.posimages.com.
2. Be Open
Itold my sisters first. Then, I told my daughter, who was 16. I wasafraid to tell her because she had just lost her brother and now couldloose her mother. Sometimes it’s best to tell family members one on oneso you can both openly express your feelings. I think you should justtell people, “This is what is going on with me, and I want you to know,and if you want to support me that’s fine.”
Find pointers for disclosing to your kids from the Women’s Center at the Well Project, www.wellproject.org.
3. Be Realistic
Mysisters were very supportive. My daughter just broke into tears. Shewould come to the hospital and cry and cry. I couldn’t take it. It wasdevastating. My nephew’s girlfriend didn’t want me to go anywhere neartheir kids, who I used to see all the time, or even sit on their couch.It’s hard, but you have to tell yourself, “I’m the one who has to livewith this and take these meds and go to the hospital, not you” and moveon. And if family members won’t support you there is an organization orsomeone who will.
Check out AIDS Meds’ disclosure lesson for ideas of what to say and expect, www.aidsmeds.com.
4. Get Connected
Itook my daughter to a support group for HIV positive women so she couldunderstand what I was dealing with and how strong we were. I think nowshe actually prefers my status because I’m off drugs and involved inher life. Then other women started to bring their kids and husbands,and I think it really helped everyone. My nephew’s girlfriend broughtthe kids to my house for the first time recently. Now they arepractically grown. But for some people it just takes time.
Contact your local AIDS Service Organization for the Support Group nearest you.
5. Get Busy
Italk to my family about HIV all the time because I know I’m going tohave to deal with it for the rest of my life. I was just telling themabout the Campaign to End AIDS and that I want to march from New Yorkto Washington, DC. I have an AIDS barbecue four times a year to raisemoney, and my family and friends come and support me.
Find out what AIDS related events you can take your family to from POZ’s calendar of events, www.poz.com.
Should You Tell?
TheGay Men’s Health Crisis’ Patricia Kummel, PhD, says if you havedisclosure worries, dealing with the diagnosis yourself first givesclarity to the talk. Then, pick a family member you trust and chatabout telling the others. Find a time low on stress. And if you standto lose financial support or fear violence, it may be better to keepmum for now. Call GMHC’s hot line, (800.243.7692), or e-mail hotline @gmhc.com.
We are Family
As the holidays near, one HIVer tells how she told her loved ones about HIV