When I first tested positive for HIV, I panicked. I planned my own funeral and obsessed about who would take care of my daughters after I died. I was sure my time was limited, so I took my daughters to Disney World and spoiled them at every opportunity I got. Three years later, when I hadn’t gotten sick—not even a cold—I realized I better stop running and deal with it.
That was 1992, and since then, I’ve learned how to cope with my HIV and learned a lot about myself in the process. When I stopped fearing what others would think about my disease, I found my voice. And for me, a female who grew up in a strict Muslim community, that was empowering.
I never found out for sure how I got the virus. And for some reason, at the time, it didn’t matter. I assumed it was either from my late husband, who also tested HIV positive after I learned that I was, or from the blood transfusion I received in the 80s when I broke my arm.
Sometimes I think I was infected by the latter because my HIV is virally suppressed, and much milder than my husband’s was. Either way, I’ve been lucky. In fact, most of my conversations with my doctor are more focused on my type 2 diabetes. The only real HIV-related condition I’ve had is oral thrush, a type of candidiasis or yeast infection I get in my mouth. I see my doctor twice a year and only started taking antiviral medications six years ago when my viral levels rose slightly.
My husband was not as lucky. He passed away of AIDS-related lymphoma almost 10 years ago.
That’s when I decided to start focusing on myself. I became an advocate for other people with HIV through the Positive Women’s Network and the AIDS Taskforce of Greater Cleveland. I started speaking at different support events. I became a member of several HIV support groups at the local and national level. I went back to school and got my bachelor’s degree, and then went on to get my master’s in social work.
Now, I’m a licensed social worker (LSW) at the AIDS Taskforce of Greater Cleveland, and my goal is to empower others. I work with clients to make sure they’re getting insurance, monitoring their virus, and taking their medications.
There are different types of denial among people diagnosed with HIV. Some refuse to take their medication, continue abusing illegal substances and barely see their doctor. Some take their medications religiously, but refuse to tell anyone about their condition, which can be just as debilitating.
Good mental health is just as important as physical health.
The reason I never found out for sure if my husband gave me the virus is because I didn’t want to be mentally imprisoned by the thought. I didn’t want to blame him for the rest of his or my life, because I knew I played an equal role in contracting the disease. Accepting equal responsibility for unprotected sex – or for however an individual contracts the virus – is something I discuss often with my clients.
I also tell them that they should still have hopes and dreams – that HIV can’t stop that. I use my life as an example. Since my diagnosis 23 years ago, I’ve raised two daughters, have two grandchildren and earned my master’s degree.
I know that there’s still a serious stigma around HIV. I tell patients the first thing they need to do when diagnosed is decide how they feel about being HIV-positive, because no doctor or social worker can help them if they don’t feel okay with it.
I chose the name “Naimah” when I was a teenager. In Arabic, it means joyful, peaceful and strong. I’m still growing, but every day I’m learning to be Naimah. I have learned that my voice has a right to be heard, and I will spend the rest of my life helping others realize that theirs does, too.
Naimah O’Neal has lived with HIV for 23 years and now counsels others as a licensed social worker for the AIDS Taskforce of Greater Cleveland.
