The Stigma of It All
June 19, 2013
1992 was supposed to be a great year for me. I had just graduated from college with my nursing degree. I was ready to take on the world. I had chosen to focus on critical care nursing and found a job at my local hospital in the Intensive Care unit. I was pumped and excited for all the days and events and challenges that would lie ahead. September 9, 1992, changed all that for me. On a routine day, in a routine evening shift, we had an emergency admission. I under my preceptor's care was responsible for getting my patient admitted into the ICU and stabilized. I followed all standard universal precautions; I wore my gloves, I took my time and as I inserted the catheter into my patient's vein to start his intravenous line, I removed the needle. At that second the patient moved his arm and the needle jabbed my left palm leaving a half moon style jagged tear in my palm. It had sliced through my gloves.
The patient had end stage AIDS. He died within 10 days of my needle stick injury and I tested positive for HIV a mere 6 months later after repeat testing and follow up by our hospital's employee health/occupational services team. To say that I will never forget two dates in my life -- Sept 9th 1992 and April 7 1993 (the day I found out I was positive) -- is an understatement.
Lancaster County, PA in 1993 was a sleepy part of the world. Known best as home to the Amish, conservative values and a strong republican mindset. There was no room in that part of the world for homosexuality, drug use and definitely not AIDS. The day I found out I was positive is the day I literally feared for my life. I remember worrying that people would stone me or vandalize my house or my car if they knew I carried the deadly, contagious virus. I remember in a dream-like state thinking that my life was over and that if someone knew why it was over, they would mistreat me and anyone I had contact with so wrongly that I would never be able to rise above such torment.
There was a guy I was seeing and we were in love. The relationship had blossomed quickly and he had casually asked me to marry him and I had just as casually said yes just a few weeks prior. We were planning a long engagement. Now I would have to not only tell him about my seroconversion to HIV positive, but also release him from any obligation to me. I would have to push him away, far far far away so that he didn't get hurt in this big mess I found myself in. He would have to become a very real casualty of this new war I was set to battle.
The days, weeks, months and years that followed my seroconversion are a blur to me now. It's 2013 and AIDS dementia or HAND or encephalitis has robbed me of my memories. It's so hard for me to look back in retrospect and truly tell you all the things that occurred over the last 20 years. I do know that somewhere, with the help of my then college roommate and very best friend, I found the courage to begin to look HIV in the eye and come up with a plan to not hide. I chose to go public with my seroconversion story in the hopes that by doing so I would help someone else along the way, and that my story would not be repeated.
What I found in my going public was a huge, monstrous sense of inequality. I was accepted, welcomed, loved and lifted up in circles all around the US and even internationally. Yet my brothers and sisters who too were HIV positive through unprotected sex or illicit drug use were shamed, laughed at, ridiculed, discriminated against and overlooked time and time again and the whole cycle of stigma and shame took a very big hit on my own psyche.
It never mattered to me how one became HIV positive. Through my support groups and volunteer work, I had met people years younger than me and several years my elder who I counted on as friends and confidants who were dying before my eyes of the same virus that I had and yet their lives, their experiences, their stories were not only never told but their lives weren't even remotely valued. Over time, this imbalance made me sick. It was the kind of heartsickness you can't get over. It filled my soul with darkness.
Through the years, I was able to find true love in that young man I mentioned earlier. He chose to stay by my side and did not run away. This May we celebrated our 19th wedding anniversary and he is still HIV negative. We were fortunate to be able to adopt two children, both whom have their own special needs stories to share; and we have one biological son. All of our children are HIV negative. 13 years ago however is when I decided that I couldn't take any more of the discrimination, fear and hatred towards my peers who were HIV positive.
My oldest son was then about 4 years old and he came home from his play group singing a song about Barney the purple dinosaur. "I love you, you love me, Barney gave me HIV". My husband got into a fist fight with an extended family member because he was telling AIDS jokes at a party. My husband broke two ribs and busted up his face pretty good ... I knew then that I had to get out of the AIDS speaking circuit. I had to distance myself and I had to hide. It was for my own sanity and what I perceived as the sanity and safety of my children. It seemed that the ignorance, fear and stigma of HIV would never go away and I worried that even though I was lifted up and celebrated in health care worker circles it would never translate into our real lives and that the outcries of hate and discrimination would simply haunt me till the day I died. I truly feared that the stigma could be directed at my husband, my children and all those others that I cared about. It was enough to send me into hiding and silence.
We moved to LA in 2005. My children and my husband and I began our lives anew. We rarely spoke about HIV in our home. I rarely accessed medical care except when I really needed it. I didn't join any support groups. I didn't follow any blogs. I cancelled my subscription to all AIDS advocacy magazines. I ignored requests to speak and educate. I shut that part of the world off. I accepted my diagnosis of neurocognitive decline and did nothing about it. I accepted my disability payments and simply lived my life. My children for the first few years had absolutely no interaction with anything or anyone related to HIV. Then a few years in, I volunteered for a red carpet event. It was a music related event for an afterschool program and through my volunteer work, I stumbled upon a PWA. The flood gates for me came sprawling open. I wondered what this new landscape of AIDS services and organizations looked like in LA. I wondered if I could safely come out as positive and if things were different here.
Through this PWA and his connections within the entertainment industry, an industry that two of my three children had begun to be involved in on a moderate level, I met a few other PWAS. I began to ask questions and see what the temperature was like for advocacy vs. discrimination. This was around 2008. I was told very clearly -- if you want your kids to work in this town, don't come out. Keep it to yourself. There's still a lot of stigma out there. Volunteer if you must, but don't disclose.
Wow! Now this is LA ... the land of fairytales and make believe. I think I was truly shocked and it took me awhile to process this. The bottom line was that if I disclosed my status, my kids would be discriminated against in an industry that had lost so many to this disease and yet the message was to hide and basically encourage shame and self loathing and fear?
Well, we did just that. My kids as they got older participated in the AIDS WALK for almost 4 years running and for a couple years they had a good team of young Hollywood assembled BUT we never said why, we never said who, we never said in memory of ... we just walked and walked and walked and hoped by the experience alone we somehow made a difference.
As I remember those AIDS WALK days now, it still saddens me that I couldn't let my kids then be comfortable enough to share and be open and be receptive to a community that could have lifted them up. Instead I opted for fear and perpetuating the stigma. I allowed the shame to be forefront in our lives. I was still hiding but this time I was hiding publicly and I was allowing the stigma to win.
Late 2012 was a really rough time for all five of us in my family and the AIDS dementia with psych complications got worse for me. According to my records, I have a mood disorder secondary to HIV/AIDS and pretty much exist in a mixed state of anxiety, mania or depression and my cognitive decline has increased since my diagnosis in 2005. HIV dementia primarily affects my areas of learning, memory, visuospatial/visuoconstructional ability as well as abstract & novel reasoning. My psychomotor speed and motor dexterity are also affected.
During this exacerbation of my illness, my youngest son learned about HIV in school. He was in the 7th grade. The lesson on AIDS was taught as a paragraph in his textbook in health class bunched in with info on other STDs. There was no guest lecturer. There was no classroom wide discussion. There was absolutely no mention of encephalitis or AIDS dementia as opportunistic infections or problems for people with HIV. After class as he was reeling from the lack of information he had just witnessed. He was confused and scared and even angry. He chose to tell a friend that his mom had AIDS. That decision was a brave one especially for a boy in a large public middle school. The friend hugged him and promised to keep his secret.
My son was hurt. He didn't want it to be a secret. He wanted it to be a known fact, like her mom's breast cancer. He didn't understand the difference. He told us the story that night at dinner. The tears he shed that night were from his gut and reminded me of all the tears I had shed in the past 20 years -- not even for myself but for all those who stories would never be known, whose lives would be lost in silence, whose infections could have been prevented with an open dialogue and education.
So as we talk about stigma today in June 2013, it seems to be a hot button issue thanks primarily to movie mogul, Tyler Perry. In his film, Temptation, stigma and prejudice appears to be promoted, encouraged, facilitated and the misinformation is hitting a whole new generation of young people. These young people need to know the truth and need to confidently end the silence and win this war!
I ask all of you to remember that all the negativity and discrimination in the world does is dig the holes a little deeper and make it harder for us to climb to the top and reach the success. It pushes people further and further away. Stigma against HIV and PWAs is very real and very alive and it scares people into not being tested. It facilitates people's reluctance to get care for themselves and their partners and their families. It says to society that people with HIV are nothing to value; that people with HIV are expendable and they should be punished for their stupidity, for their lack of knowledge or for their lack of restraint and self control. It perpetuates misinformation and a lack of understanding and widespread education in not only prevention but in disease understanding and care.
The stigma that exists today may be presented a little differently then that in Lancaster County, PA in 1992 or even Los Angeles, CA in 2005. Maybe it even appears to be less sinister and somewhat acceptable by society as a whole. Yet make no mistakes about it, everywhere I go I find that it still exists and I know that it still stings. It shouldn't matter how one gets HIV. What matters is that they need care, comfort, access, support, education and basic needs such as housing and food and treatment for any comorbidities. They need human kindness, prayers and support. Looking back to last year, it's all my 13 year old wanted from his classmates and teachers after that paragraph was taught in his school. He was fortunate though to have a mom and a dad who could walk him through the experience and educate him and hold him tight and make it all seem so much better and chase the bad guys away for just one more day
That's what we really need to do to stigma. Chase the bad guys away who are facilitating it and dig down deep and make it disappear. Forever.
Read Lynda's blog, Get Outta My Head, You Crazy Virus!.
This article was provided by TheBody.
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