When did you first realize that you were African American?
I never thought I was anything else.
How have you learned to deal with racism?
Oddly enough, I have never dealt with racism.
What is the biggest challenge facing African Americans today in terms of HIV?
The biggest challenge for African Americans in terms of HIV is that we tend to keep things locked away and don’t want other people to know about it. If we were more of a community, we would be able to deal with this epidemic together. No one wants to talk about it -- families don’t want other family members to know. Misinformation is a breeding ground for ignorance and hatred. Also, African Americans don’t want to seek help. Help and services are out there, all we have to do is go get it.
Are there any specific aspects of African-American culture or identity that give you strength?
The sense of family and history. Family is very important to me. I draw my strength from my family. Our family traced its heritage back to Frederick Douglas, the greatest black abolitionist during the time of slavery. You have to know where you come from to know where you are going.
What is the biggest change you'd like to see in HIV treatment, prevention or education for African Americans?
I think that the message needs to be spread about HIV prevention to our youth at a very early age. No one talks to them about things until it is too late. HIV is real and it is killing our society at a rapid rate. Something is wrong with the message that we have been sending.
My fear now is that there is an attitude of apathy. People see that the disease is manageable, so they think that it will be okay if they contract HIV because there are meds to take. But what they do not see is the effort and the commitment that it takes to manage the disease. Taking pills every day for the rest of your life -- with side effects to boot -- who wants to do that? I can ’t even commit to going to work for the rest of my life!
How has your health been since your diagnosis?
Great. I have had wicked sinus infections, but nothing more than that. I have not been hospitalized and [have no other] symptoms. I just have to learn to rest and try to remember that I can’t rip and run like I used to. My babies understand that too. They always ask me -- Have I rested today? They actually tell me to take a nap.
When I started answering these questions I was okay. Recently I had an abnormal HPV test and I will have to have a cervical biopsy to test for cervical cancer. As you know, the risks increase with HIV. I will keep everyone posted.
Are you on a regimen now?
How did you choose your current doctor?
My doctor sent some of his patients where I work, so when I saw his name in the insurance book, I knew he was the one. I knew that he sent his patients to our lab and I knew that he was an Infectious Disease doctor. I never saw any of his patients, just their lab work and I knew that their levels were good. It was just a feeling that I had. I knew that he would be a good place to start. If we did not click, I could always find another one. Once I met him, I knew I had made the right choice. He makes you feel so comfortable and he never rushes you through a visit. He always makes sure that you’re okay before you leave the office.
Do you think you are getting the best care possible?
Yes, I do.
Is your doctor African American?
My primary physician is, but my ID [infectious disease] doctor is not.
Does your doctor treat you like a partner -- in terms of making decisions about your health?
Both my doctors are wonderful and what I love is that they always take the time to ask what I think the problem is before they make decisions. They start off asking how things are going -- getting an update on my daily routine -- before we go into the medical parts of the visits.
Can you explain your daily routine? Do you have a particular health regimen that helps you stay well?
I go to school full time and I work full time and in the middle of all that, I take care of my four beautiful children. I pray and read my Bible every day. I eat healthy and stay active. I am moving towards going to the gym at least three times a week.
How have your relationships with family and friends changed since you were diagnosed?
They haven’t changed at all. My family is still my family and my friends are still my friends. They love me regardless. In fact, they are more protective of me.
How do you decide whether to disclose your HIV status to someone?
I just find a way to slip it in to the conversation. You would be surprised how many openings you can find to put it out there. But only if they need to know, because everyone doesn’t need to know.
What do you mean by “if they need to know”? How do you determine that?
Everyone is not worthy of that part of my life. If it is someone that I don’t get a good vibe from, then I won’t tell them. Some people don’t process that kind of information well.
What are the best and worse responses you have ever gotten from telling someone?
The best response was a hug and a kiss from my co-workers. The worst response was a guy telling me that he couldn’t handle being friends with me.
How has your sex life changed since you became positive?
I still have sex, just not that often. At first, I was just having sex. I am human and I do have needs. I was with people who were HIV positive so there were no disclosure fears and no hang-ups. Now I am in a relationship with someone who is HIV negative. I have known him for a very long time. He is a little scared because there is so much he does not know about the disease. He asks a lot of questions and we talk about our relationship constantly. I don’t bug him about it because I know that it is a lot to take in all at once, especially with me out there telling my story all the time. He really wants to stay out of the spotlight. He thinks like I thought the first time: I am in love with someone, not I am in love with someone who happens to have HIV.
Did you make any New Year's resolutions this year?
Only to live.
What's the greatest adventure you've ever had?
Going to the Grand Canyon for my birthday. It was the most awesome experience of my life (next to childbirth). To stand on the edge of creation and witness God’s majesty was truly a blessing.
If you were granted one wish, what would it be?
Are you kidding? To have my husband back, HIV and all!!!!
Charlene can be reached via e-mail at firstname.lastname@example.org.
Talk to women about HIV at The Body's Community Center.