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First Person: Charlene

About Charlene
Age: 35
Home: Washington, D.C.
Diagnosed: 2004

When Charlene met the love of her life in 2002, she discovered that he was HIV positive. That didn’t deter her. By 2004 she was not only engaged to him, but was also diagnosed with HIV herself. After her husband’s death in 2005, Charlene made up her mind to focus her energy on activism. She had witnessed firsthand the isolation and depression that had incapacitated him. A religious woman, Charlene works hard to ensure that her church is a safe haven for positive parishioners. But her activism takes a back seat to her commitment to her four children (from a previous marriage). Each week she prepares Sunday dinner so that the family can be together. In addition to taking classes, writing short stories and poetry, Charlene works in a hospital laboratory.

How did you find out you were HIV positive?

I was getting testing regularly because I was engaged to someone that was positive. This [one] time I went in to get tested and the test was reactive.

How do you think you became infected?

I didn’t protect myself all the time. Plain and simple.

How long after meeting your husband did you learn that you were infected?

We started dating in 2002, I was diagnosed in the beginning of 2004 and we married the middle of 2004.

How have your feelings about having HIV changed over time?

I think there is a lot about HIV that I don’t understand. Everyone deals with their HIV differently. I get really upset when I see how blasé kids are about HIV, especially African American kids. I know that when you are young you think everything will be okay, but the reality is that it is a cold cruel world out there and HIV stays with you forever.

How long do you think it takes to process a diagnosis?

I don’t know. I think it is on a person by person basis. I didn’t have much time to process. I cried for 30 minutes and then called my mom from the clinic and then called my best friend who went home with me to tell my mother. After that I stopped thinking about it. That night my family and I went to see Disney on Ice. I knew what I had to do because I was already taking care of someone who was HIV positive. My diagnosis really hit me on my two-year anniversary of having HIV. I broke down crying in my mother’s arms on the front porch. It really hit me that I had HIV, my husband was dead, and my life would never be the same ever again.

What advice would you give someone who has just found out they are positive?

The advice I would give to someone who has just found out they are positive is this: First of all, educate yourself about HIV/AIDS as much as possible! Don’t leave it all up to the doctors. Please don’t isolate yourself. Seek out help immediately. If you go to a clinic, ask for referrals to support groups or any information that they can give to you. Find a good HIV doctor that you feel comfortable with. A good doctor who cares can make all the difference in your treatment.

How has being HIV positive changed you?

I have become even more compassionate than I was before. I’ve always been a softie. I’ve cried while watching Snoopy Come Home. I have always had compassion for others and I never like to see people hurting. Five years ago, I never would have gotten involved with someone who had HIV. I didn’t know anyone who had it and it was something that never entered my life, so I didn’t think about it, even though I knew it was out there. I knew about Ryan White and how he got infected with HIV, but he was a child. I had seen the movie Philadelphia, but he was gay.

"The advice I would give to someone who has just found out they are positive is this: First of all, educate yourself about HIV/AIDS as much as possible! Don't leave it all up to the doctors."

I had never met someone who was heterosexual that was living with HIV. When I met my husband and he told me about how he contracted HIV, I began to see that there was a whole different side than what the media and society portrayed. Hearing his story and seeing how sad and hurt he was -- still asking “why”, even after six years, just touched me to the core. Even when we had broke up a few times during our relationship, I was still his friend and I could not turn my back on him just because he didn’t want to date me anymore.

Tell us a little about your life. What do you do for a living?

I work in a hospital laboratory. I see very few patients, but I have come across a few that are HIV positive and have bonded like crazy with them. One of my patients died a little while ago. He put up a brave fight. I took it very hard.

What did you want to be when you were a kid?

I wanted to be a doctor. First it was a pediatrician, then an OB/GYN [obstetrician/gynecologist]. After I got into college and took my first college English class, I wanted to be a writer.

How did you end up working in the medical field?

When I was a teenager, I worked at McDonald’s. When I got older, I did a lot of secretarial work. I took a correspondence course in Medical Billing. I then went to school to become a Registered Medical Assistant. After I graduated, I got a job temping in the hospital where I am working now …. I left the job after I got pregnant with my last child. My first husband and I were also planning on moving away, but he got called overseas. I never went back to work after the baby was born. A year later the same job called and told me they had an opening and the other staff had requested me. They asked me if I wanted to come back and work permanently. I couldn’t wait.

Where were you raised and what did it feel like growing up there?

Washington, DC. There were a lot of children to play with and my brother and I had lots of parties that we would invite our friends and classmates to. There was always a sense of family in the neighborhood. We always had a lot of family in our house at some point.

Tell us about your partner and family.

"My husband died nine months ago from AIDS. Next to my children, he was the love of my life; he was the reason why I decided to become an AIDS activist."
My husband died nine months ago from AIDS. Next to my children, he was the love of my life; he was the reason why I decided to become an AIDS activist. I watched him suffer from isolation, fear and depression. He didn’t have a good support system. He was one of the ones that slipped through the cracks in the system. By the time we met, he had given up and didn’t feel that life was worth living. By the time we married, he had changed his mind, but it was too late, he was just too sick. He had crappy doctors who didn’t care. The whole system failed him, but he also failed himself.

My family has been wonderful and very supportive. At first my parents could not understand how I could get involved with someone who was HIV positive, but love is love. I have four beautiful children from a previous marriage.

When you first met your husband, did his HIV status worry you?

His status didn’t bother me, I really didn’t think about it. I didn’t know much about HIV in the beginning. Nor did I know that he had full blown AIDS or what the difference was. Our relationship was far from perfect, but it was perfect for us. He was the light of my life and still is in some ways.

How did your relationship develop?

We met in the grocery store where he worked. It was right after I gave birth to my fourth child. We had always seen each other as I had been coming there since my kids were little. We would talk and tease each other but that was it. I had started having dreams about him rescuing me and I had the same dream for two weeks straight. My best friend came to the store with me and we got in his line and she told me to “get a spine and talk to the man.” I asked him out and he said yes and that was that. That was in 2002. Like I said, it was far from perfect. He pushed me away many times because he did not want to get into a relationship and then get hurt again, but it was really because he was in love with me and he was real sick and he did not think that I could handle it. He didn’t trust me.

I was there when he lost his job and his apartment and most of his friends turned their backs on him and his world came crashing down. (When I say that, it is because that is exactly what happened!) He got PCP pneumonia [pneumocystis carinii pneumonia ] in both lungs right after that and was in the hospital. When he came out, he called me and told me that when he was in the hospital all he could think about was me and how I was there for him and asked for nothing in return. He said he was stupid and he loved me and would I give him another chance. Needless to say, you know what the response was!!

He still had his moods and his health got worse. But I think my diagnosis put things into perspective a little bit. We spent most of our time in and out of the hospital and he actually proposed to me while in the hospital. I said yes and we married two weeks after that. That was in 2004. It was the happiest 14 months of my life.

There is so much that I couldn’t tell it all. All I know is that I had what people spend their whole lives looking for just a fraction of.

What is your relationship like with your previous husband? How did he react when you became involved with someone who was HIV positive?

My ex-husband is my best friend. We have been best friends for 20 years. We were married for ten years and had four kids. Our relationship has pretty much stood the test of time. We still spend time with each other even without the kids. We tell each other almost everything. Even best friends have a few secrets. He did not know that I was dating someone that was HIV positive. He didn’t know until after my husband died. He was angry and sad because he felt that someone took me away from him to a place that he could not follow.

"My children did not know what husband had died from. That was something I chose to keep from them. When they found out about his status, there was no reaction, they were just sad that he was gone."

Tell us more about your kids -- How old are they? Did they know their step-father was HIV positive? If so, how did they react when they found out?

My babies … really they aren’t babies, but they will always be my babies. I have two girls (12 and 4) and two boys (10 and 7). They go back and forth between my house and my mom’s house. I go to school also and my schedule is sometimes chaotic. They love spending time with nana. They did not know about their step-father until after I disclosed my own status. My children did not know what husband had died from. That was something I chose to keep from them. When they found out about his status, there was no reaction, they were just sad that he was gone.

What do you enjoy doing as a family?

We love having family time with each other. We have Movie Night every weekend and we have Sunday Dinner every Sunday, which includes my ex-husband. My parents are divorced but we still come together for Sunday Dinner. Family is very important to me. When my children get old and gray and have children of their own, I want them to look back and know that mommy and daddy were there and be able to talk about what they did with their parents, like I do with them. I love the spring because we always go the Kite Festival. I love the fall because it is the time of the pumpkin and leaves and nice fluffy sweaters. We go to the pumpkin patch and dress up for Halloween and make leaf scrapbooks. I want to make memories that even time itself would lie down and be still for.

What do you like to do in your spare time?

I like to read and I love to write. Since my husband died I have gone back to writing in my journal. I have written poems and short stories and lot of little thoughts that I have during the day. I am trying to get myself to just veg out on the computer and just play games instead of working on it all the time. I am trying to just have downtime. I also love to dance, it just makes me feel free.

Are you a religious or spiritual person? Do you attend a church?

Yes, I am very religious. I believe that God can do all things. I know that it is God who has kept me healthy all this time. I do attend church, I am United Methodist.

I am in church at least three Sundays out of the month. I have an HIV/AIDS Ministry at my church and it is going quite well. I am excited. I want my ministry to be a safe haven for those who don’t have one.

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.

"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. ... No one wants to talk about it -- families don't want other family members to know."

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 medicines they can take."
What are your fears and hopes for the next generation of African Americans as they face the risks of HIV?

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?

I do not have to take meds right now. My CD4 count and viral load are at levels where I do not need to take them. [My doctor] does not want to put me on them until I have to be on them.

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 gmnimoon@msn.com.

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