I wonder why you clicked this link. Is it because you truly want to know what it’s like to love someone with HIV? Is it because you want to know if my feelings of loving someone with HIV are the same as yours? Or maybe it is because you couldn’t pass up an opportunity to stigmatize and judge yet another person with HIV?
HIV is an illusion to many of us who are not directly affected by it. It isn’t real to us: some distant celebrity or unknown persons with a substance addiction, some local fear tactic. It just doesn’t exist to us; it’s not our concern. Not knowing quite how to care.
To love someone with HIV was the most painful experience in my life. You’d think I was the one who had been diagnosed.
But why, why was it such a painful experience? There have been so many medical advances when it comes to HIV and AIDS that such a diagnoses is no longer the death sentence it was once thought to be. Today, persons diagnosed with the virus can look forward to living long and prosperous lives. Am I right?
You couldn’t be more wrong. From a perspective of physical health, that is true, because of medical advances, some persons diagnosed with HIV can live healthy lives. We’ve even made advanced steps towards prevention with PrEP (coming soon in generic form). For others, this is not so. From a social perspective, an HIV diagnoses can absolutely become a death sentence; one of shame, of guilt, and of discrimination. The stigma of HIV is now more dangerous than the actual virus itself. Not just to physical health, but psychological well being most of all.
Robbery by Shame
I never realized shame could actually rob a person of their will to live. But I witnessed it with my own eyes, with my own beingness as shame and guilt sucked the life right out of my mother. To know that someone you love is suffering, dying a slow and excruciating death to shame, guilt, and heavy stigmas surrounding the diagnosis of HIV is excruciating to watch.
Shame is the plague to our journey of self-realization.
My mother was HIV positive. I remember when she sat down to tell me. She spoke with such somber disappointment; an air of defeat all around her. I responded with shock which wasn’t the best response, but it’s the one that occurs when something you never thought could happen happens to you.
It was exactly this moment that HIV became real to me. It didn’t take me long to process it. Despite my initial shock, there was nothing to process. She was my mother, I loved her just the same. Her diagnoses did not matter to me and soon it left my mind altogether, but it never left hers. How could it with the stigma of HIV lingering stagnant all around us despite medical advances?
Suicide by Diagnosis
During the time after my mother had been diagnosed, she had also been diagnosed with cervical cancer. I lived a distance away so I didn’t see my mom that often. When I did see her I was constantly reminded of her diagnoses as I watched her withdraw from the world, withdraw from family, from us, her children, from her grandchild, my daughter whom I knew was her most favorite something in this life…my best gift I could have given her. The stigma of HIV had my mother by the balls if there were such a thing for her. She was cornered in a depressing and lonely place.
The hugs and kisses became fewer and the distance greater. It was like she was punishing herself, so careful not to pass her virus to others. Prior to her diagnoses, I used to say to her, “Ma, you can’t contract HIV that way.” Then she’d tell me, “That’s what they tell you now, years later they’ll be saying something different.” As a nurse, she had a lot of inside information on the “unknowns” of HIV. Just a random tidbit.
She’d tell me about her experiences and encounters with people who were aware of her diagnoses. Sometimes she’d become so hurt by the judgement, she’d erupt in anger and other times she’d laugh hysterically about the facial expressions and reactions of others. Mostly she just stayed tucked away from everything and everyone.
Your love is my love; Your pain is my pain.
I hurt. I hurt because she hurt because even as her daughter, not judging her and loving her just the same was not enough to overcome the social stigma of HIV. No matter what I said, no matter what I did none of it helped…none of it convinced her to fight. She tried to fake it, but like me, my mother was never good at that thing…faking. She was pretending for us which also caused me terrible pain.
There is no shame in desiring death. Death is peace.
I cried often. I prayed for God to help her see how loved she was. But all she could hear were voices of judgment crowding her in shadows of shame. I know because that’s all I could hear from her.
It hurt so much to witness my mother in such a weakened state after seeing her be so strong for so long. So much that at times I could not stand to be around her very long without bursting into tears. I tried and often times she’d console me and apologize constantly for her sadness, for her desire for death. She didn’t need to apologize, I understood much more than I ever wanted to.
Stamp out Stigma and Discrimination
My beloved mother ascended into greatness on what was Wednesday, June 27th 2012 which also happens to be National HIV Testing day first observed on June 27th 1995. Not very many family or friends knew that my mother was HIV positive and still don’t however, I doubt I have to tell you why. Even in her ascension it is still only whispered about among those of us who do know. For awhile, I was the only one she told.
I wrestled a lot with myself about whether I should write and publish this post because of the same reasons…stigmas that caused my mother to withdraw from life. But I’ve found that the more I talk about it, the more open I am about it, the less need I have to hide it, and the less shame I feel about it.
Eradicating the stigma of HIV will not be easy but it is absolutely necessary.
To learn more about the stigma of HIV visit HIV Stigma and Discrimination and Stigma and Discrimination against Women Living with HIV.
You should also check out Angry Black Hoemo’s HIV Stigma: A(nother) Tool of Homophobia & Direct Enemy of Prevention where he gives his blunt and honest perspective on the stigmas of HIV.
Free testing is available in many places on June 27th. To find out more about HIV and how you can get free testing on testing day visit National HIV Testing Day on Chronicsex.org.