As the holidays near, one HIVer tells how she told her loved ones about HIV
Shirlene Cooper 42, Brooklyn, NY Diagnosed 1997
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 hotline @gmhc.com.
