42, Brooklyn, NY
I think it’s hardest to disclose to family, because they are supposed to love you unconditionally and accept you, and the idea that they might reject you hurts. I felt like I didn’t have a choice. I was diagnosed with HIV, tuberculosis and cervical cancer at the same time. I had to tell someone 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 prison since 1978. I had known I must be positive when my 2-year-old son died of AIDS in 1995, but I didn’t get tested. I didn’t want to know. After I tested positive, I cleaned up my act, and now I’m a community organizer for New York City AIDS Housing Network. My family was very supportive, and that is a big reason I’m still here. Disclosure is hard, and not everyone’s family will be as supportive as mine; but everyone should have their family’s help—and you don’t know what they will think until you tell them.
—As told to Lucile Scott
Shirlene’s Five Disclosure Tips
1. Get Ready
I just told myself I’m not going to feel bad about what I have or about myself. I think everyone should see a therapist to help decide how, when [and if] you should disclose to your loved ones. You feel nervous and confused, and just talking to someone in a neutral zone who can make 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
I told my sisters first. Then, I told my daughter, who was 16. I was afraid to tell her because she had just lost her brother and now could loose her mother. Sometimes it’s best to tell family members one on one so you can both openly express your feelings. I think you should just tell 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
My sisters were very supportive. My daughter just broke into tears. She would come to the hospital and cry and cry. I couldn’t take it. It was devastating. My nephew’s girlfriend didn’t want me to go anywhere near their 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 live with this and take these meds and go to the hospital, not you” and move on. And if family members won’t support you there is an organization or someone who will.
Check out AIDS Meds’ disclosure lesson for ideas of what to say and expect, www.aidsmeds.com.
4. Get Connected
I took my daughter to a support group for HIV positive women so she could understand what I was dealing with and how strong we were. I think now she actually prefers my status because I’m off drugs and involved in her life. Then other women started to bring their kids and husbands, and I think it really helped everyone. My nephew’s girlfriend brought the kids to my house for the first time recently. Now they are practically grown. But for some people it just takes time.
Contact your local AIDS Service Organization for the Support Group nearest you.
5. Get Busy
I talk to my family about HIV all the time because I know I’m going to have to deal with it for the rest of my life. I was just telling them about the Campaign to End AIDS and that I want to march from New York to Washington, DC. I have an AIDS barbecue four times a year to raise money, 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?
The Gay Men’s Health Crisis’ Patricia Kummel, PhD, says if you have disclosure worries, dealing with the diagnosis yourself first gives clarity to the talk. Then, pick a family member you trust and chat about telling the others. Find a time low on stress. And if you stand to lose financial support or fear violence, it may be better to keep mum for now. Call GMHC’s hot line, (800.243.7692), or e-mail email@example.com.
We are Family
As the holidays near, one HIVer tells how she told her loved ones about HIV.