Is There Any Sensitivity and Compassion for Me?
By Rae Lewis-Thornton
September 13, 2011
This piece originally appeared in Rae's blog, Diva Living With AIDS.
Today Henrieese Roberts responded to my Blog Post Below, I Wanted to Give Up But God and Twitter. I was going to respond to her on the post, but decided I had too much to say... But it's the one below this one, you can just scroll down.
This is Henrieese Roberts Comment
U are not the only person in the world who is ill Rae with health issues. U need someone to help u be with u through these trying moments. Make some soy shakes or something. U really wail a lot to me! Like u are the only 1 with health issues. Be so damn angry with our fuck stuff and who will fuck me stuff Get u some more rain music and maybe somebody will buy those beads. Get somebody to be with u and lighten up on the fuck stuff. Some of us r not into that fuck stuff u were so into.
My Response ...
When I saw this comment above I was so pissed that I posted on both of my Facebook pages that I write what the hell I want to on my blog and if you don't like it, you can stay the fuck off.
Then I stepped away to calm the heck down. After Facebook and Twitter attacks in one day I needed a break from Social Media, #ForReal I will address the Twitter issue later this week, it was also crazy. People say nasty, mean things to you in Social Media that they would never say to you in your face. I was so stressed that I took my frail body to Ghirardelli Ice Cream and had a large chocolate milk shake and a brownie, then I went next door to Top Shop and purchased a skirt.
After my walk down the mag mile, and my treats, I came to my senses. I had some time to give that comment some thought and I discovered that I was not only mad, I was hurt. First, after viewing your Facebook Page, Ms. Roberts, I'm assuming this is the same person on my page, I was very surprised to learn that you actually work in the HIV field because of your, dismal, insensitivity and lack of compassion. Basically my blog today was about being at a very dark place emotionally to the point that I didn't know if I could keep going or even if I wanted to keep going. But in the end, I was still able to emotionally come back to a better place, while I still struggle physically with the health issue. I was able to say through my story, if there is hope for me, there is hope for others living in a dark place. The reality is this, there happens to be a very large rate of depression and suicide among people living with HIV/AIDS. Your dismissal of my state of mind, could have sent me over the edge.
You basically said to me, that my illness is no big deal, there are other people in this world with illnesses other than you. Well, I learned early to never minimize another person's pain. I tell people all the time, what you are going through is major and just as important as what I am going through. Pain is pain and should never be measured. What if an infected person read what you had to say about me, a leader/activist in HIV and surmised that if my life is worthless, then maybe theirs is also.
I have a very large readership of people infected with HIV and my blog is also syndicated on thebody.com, the largest on-line HIV resource in the U. S. And many people look to me for encouragement and leadership, if you would dismiss me, then are they not far behind? It sends a bad message to people living with HIV.
Furthermore, for a person working in HIV to reduce a person's toxic medication, administered intravenously twice a day to, "Drink some soy shakes or something," proves to be quite insensitive and a lack of understanding of HIV. Just so you know, side-effects are a large hinderance to adherence of life saving HIV treatments, your insensitivity did nothing to help compliance with medication.
Now, regarding my style. I speak to college campuses across this country and have a large base of young people who follow me through Social Media. My candor is style and technique. Please don't confuse my methodology with who I am; An educated black woman, a minister with a Master of Divinity Degree and working on my Ph.D. in Church History. And please don't reduce my work in HIV/AIDS; The first black woman to tell my story on a cover of a major magazine, Essence, as well as, an Emmy Award winner for my first-person News reports on my life.
I understand that my candor and transparency happened to be quite provocative, and sometimes unnerving to others, but what I do and how I do it is a gift from God. I am not ashamed nor will I quit until the day I die. I also understand that there is so much room for different styles and methods in HIV Prevention work that I dare not hinder or minimize someone else's work because it is not how I would do it. If their style was too much for my sensibilities, maybe I wouldn't read it, but I certainly wouldn't tell them how and what to do. My work has been quite effective over the years and I see no reason to alter it now.
Additionally, my blog is a first person account of my life living with AIDS. I have a unique gift to tell my story in a way that it helps others. If in fact you have been reading my blogs, then maybe you have also read some of the positive comments both on the blog post and on facebook. My work has been proven, I see no need to change. Nor do I see a need to tell others how to do prevention work.
The bottom line is this, my blog is not a news outlet. This is a first person blog. I write about my life and my experiences. How dare you or anyone tell me what to write and how to do so. I would think the fact that I don't live in shame, stigma and secret like so many African-Americans would be a plus.
I was hurt by your comments. I was mad at you for pushing, no demanding what I do on my own blog. But I was disheartened to learn that you are a fellow comrade working in the filed of HIV. If your comments to me was any indication of how you feel about HIV, then I'm sad for anyone that you come in contact with living with this illness.
The fact that you thought is was ok to say whatever the hell you wanted to me, without any boundaries shows not only your disrespect for me as a person, it shows your lack of sensitivity and compassion for a person living with a chronic illness such as HIV/AIDS.
Case in Point: I said in this blog post that I was hurting both emotionally and physically. I said that the IV medication I'm on is overwhelming, and you still thought given all that I am going through, that it was ok to attack me? WOW!
And you actually work in the field of HIV? I'm wondering if this is how you really feel about all people living with HIV or was this just something in particular about me that disqualified me for compassion?
Post Script: That comment about my jewelry line was so unnecessary and actually mean. I would think another woman would lift up another woman entrepreneur.
The fact that living with HIV for 28 years and I dare to continue, to live and thrive and peruse other things, like designing bracelets would make one proud. I'm happy to be celebrating my 3rd year Anniversary of RLT Collection this month and we are growing everyday...
For those who love my bracelets, don't forget the Anniversary Sale ends Sept 16th... The discount code at checkout is Celebrate... It's 30% off...
Rae Lewis-Thornton Speaks
Rae Lewis-Thornton is an Emmy Award-winning AIDS activist who rose to national acclaim when she told her story of living with AIDS in a cover story for Essence Magazine. She has lived with HIV for 27 years and AIDS for 19. Rae travels the country speaking and challenging stereotypes and myths about HIV/AIDS. She has a Master of Divinity degree and is currently working on her Ph.D. in Church History. Rae has been featured on Nightline, Dateline NBC, BET and The Oprah Winfrey Show, as well as in countless magazines and newspapers, including Emerge, Glamour, O, the Oprah Winfrey Magazine, Jet, Ebony, the Washington Post and the Chicago Tribune, to name a few. She earned the coveted Emmy Award for a first-person series on living With AIDS for Chicago's CBS News.
Rae is an active user of social media -- read "Long-Term HIV Survivor Discovers the Power of Twitter," an article on TheBody.com about Rae's social media activities.
Speaking engagements: Inquire about booking Rae to speak at your organization or event!
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March 5, 2014 - Aging with HIV, Part Two: A Blog Entry by Rae Lewis-Thornton
March 3, 2014 - Aging With HIV/AIDS: A Blog Entry by Rae Lewis-Thornton
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