This story first appeared in More than Fiction, a publication of ASAAP which you can read online here.
I was diagnosed HIV positive a few years ago. I don’t really remember how I felt when the doctor told me that I had HIV. I’ve heard people say that HIV-positive people shouldn’t even be on this earth but I was never bothered by their ignorance. I’m a human being and I deserve to be loved, valued, and heard.
After I found out about my status, I reached out to the HIV community and made some new friends. I was happy to know that there were others like me and that we could support one another through our challenges.
It makes me a little upset when I see things on TV about HIV but then again they’re trying to help people so they don’t end up like me. I guess that’s kind of good because sometimes it feels like nobody gets me. I know most people are trying to help me, but sometimes I just wanna be able to live a life without this illness on my shoulders…you know have a normal life and live with my kids, but I will never regret who I am and what I have. It’s made me who I am and I guess that’s what’s important.
Honestly, I really don’t like the meds they give me. If I could think of one word to describe them, it’s nasty. But, my mom makes me laugh about having to take them or at least she tries to make me laugh.
I had to start ARVs shortly after I was diagnosed because my CD4 count was very low and I was not feeling too great. I started taking the meds after a month and I continue to take them every day.
Well, I never thought this would happen to me, but it did happen, and there’s nothing I can do about it except live a positive life. My prayer is for God to keep protecting me all the days of my life.
The only problem I am facing is telling my story to others. I’m so scared that people will judge me and not want to be around me if they find out that I am HIV positive ‘cuz every time I bring up the issue of HIV just to get people’s views, they say HIV positive individuals would most likely die from depression. I don’t believe them, but it’s hard to challenge them sometimes. I can only live my life one day at a time.
Now let me tell you how I got HIV. I was married for many years and had children. My children are my pride and joy, and they have helped and supported me through the years. Only a few years ago, my husband was admitted to the hospital because he was having a seizure. When the doctors did tests on him, they found out that he had AIDS.
“I think the blood must have drained from my face because he said, “You look very pale.” Well, what did he expect me to feel after such news?”
As soon as I sat down to help me recover from the news of my husband, the doctor told me that I should go for an HIV test. I think the blood must have drained from my face because he said, “You look very pale.” Well, what did he expect me to feel after such news? He had just told me to go for an HIV test, no information, no discussion! I sat there in silence while he wrote out instructions on a piece of paper for the hospital to do an HIV blood test on me. I remember looking at it and seeing the word HIV written on it.
We got the test results back, and my children were negative, but my test came back positive. I cannot describe how I was feeling. I thought I was going to die but I knew I had to be strong for my kids. I shut down all my feelings of sadness when I was around them.
When I told my children I was HIV positive they did not know what to do. They were scared to go near me and they were scared to even touch me. We did not know one thing about HIV until doctors told us and we got counselling.
I was devastated that I had HIV but I could not do anything but take care of myself and try to live my life without my kids fearing me/
When I went on medication for HIV I felt weird taking the pills and I didn’t like how I felt after I took them. I felt weak and helpless. I had to quit my job because HIV made me sick, but I could not afford to live in my apartment or support my children. After quitting my job, I went on social assistance to help with all the bills and daily living expenses.
When I found out HIV and AIDS were two different things I wondered if my husband was going to have to go on pills too. But in his case it was too late for him. He could not take pills or anything. After months being in the hospital, his vital organs started to shut down and collapse. We knew this was going to be the last time we’d see him alive. I was in tears and heartbroken that I was going to lose my husband, but my children were even more devastated. They were going to lose their loving father.
After we all said our goodbyes, we had a funeral for him. We didn’t know if it was a good idea to keep the casket open at his funeral for everyone to see him but we kept it open so people could say goodbye to this amazing man.
“Either I could choose to be bitter and blame the world for infecting me with HIV, or I could make the most of whatever life I had left”
Now you all must be wondering by now, how did my husband catch AIDS? I have been wondering the same and till today I do not know how my husband contracted the HIV virus that eventually led him to AIDS. I do not blame him for anything but I do wonder everyday what happened.
I miss my husband a lot and I wish he were here today to see his children grow into young adulthood. It was a difficult time for me, though one of the first things that gave me the strength to carry on was the fact my children did not have HIV and that they still were and are in my life. They have been a great source of strength for me. Either I could choose to be bitter and blame the world for infecting me with HIV, or I could make the most of whatever life I had left. I chose the latter and to this day, I appreciate each day that I am alive. I do what pleases me, within limits of course, and make absolutely no apologies for it!
It is now 2014, and it is going to be six years that I am living with this illness. I am in control of it. It has no control over me. I remain happy and content with a positive attitude. Today my children are not afraid to be with me or touch me because we have all taken counselling and therapy to understand more about HIV and they know how to protect themselves from getting HIV.
I have gone through a wave of emotions and feelings and it’s been one hell of a ride! I am so thankful for the support I have from my friends and family and the support I can give back to them.
I would hope anyone that’s reading this will understand that it will feel at first like your life has ended when you get an HIV diagnosis. You might wonder how you will function but believe me something like this makes you put life into perspective and you discover just how precious the time you have. What life deals us is what makes us stronger. Believe in yourselves and make the best of what you’ve got.
I won’t lie and say I don’t have my down days, but I also have some really great days. Truthfully, not a day goes by without my status and the memory of my husband on my mind. I have the conviction and energy to carry on, though, and make my life mean something to me and to my children.
This story first appeared in More than Fiction, a publication of ASAAP http://asaap.ca/ which you can read online here http://librarypdf.catie.ca/pdf/ATI-20000s/26497.pdf
About More than Fiction: Poz women Share their Stories.
In 2013 women of ELAN’s social support group at ASAAP talked about how to address a lack of representation in the HIV/AIDS movement, a recurring theme. Their discussions stemmed from feelings of frustration as they participated in research studies and focus groups yet, did not see their voices as they wanted represented in larger dialogue. The result of their discussion was a stated recommendation for a project that would enable them to create and share their story; not under the umbrella of a research study with summarized findings but simply as a collection of stories that reflect how they see their struggles and their strengths. This was the impetus for ‘More Than Fiction.’
The twelve authors of these brave and lucid narratives were engaged in a series of workshops that further developed their capacity for storytelling. Guided by dedicated facilitators and community advisors, creative writing, poetry, and photo voice were some of the modes that were explored over the course of a 4-month period.
The authors have each chosen an alias to reflect the silencing impact of stigma and discrimination that has denied many people living with HIV/AIDS the right to live openly. Their stories capture the profound isolation that living a secret life can entail, but they also give voice to the self-compassion and resilience that such challenges engender.