Monday Reflection: Herpes, AIDS and Shame ...
By Rae Lewis-Thornton
August 29, 2011
Dealing with health issues is one thing, having to deal with it wrapped in shame is an entire other thing. That's what I do everyday with this drug-resistant herpes. Yep, herpes has made my life a living hell for almost the last four years, but especially the last six months. Dealing with the IV medication treatments has been hard, but having to face the fact that a sexually transmitted disease is the root cause of this rigorous treatment has taken an emotional toll.
While people are supportive, you still wonder what they are thinking about you having this aggressive herpes and HIV. I can almost image it, she got herpes and AIDS, damn who was she screwing?
And Lord knows I wonder if a man will ever want to really date me. It's one thing that I have AIDS, but I also have this scary-ass herpes and to make it worse, I had to go and tell it all to the world. Even if he accepts your illness, does he want the world to know he is dating a woman with HIV and herpes? That's a lot of collateral damage. Let's be honest, you can't help but wonder. It's been a long journey for me.
Anyway, I'm on overload and it's a wonder that I have not lost my mind or just balled up in a corner somewhere and stayed. I'm tired as hell to say the least, but I can't undo what's been done. It is what it is and I have to face it head on.
So here I go again, yep, this week I will start IV medication to treat herpes yet again. In the last six months I have been on a medication called cidofovir. It's once a week for six hours at the hospital. The side effects are extreme: fatigue, nausea, diarrhea and kidney failure. I also had to take another medication to protect my kidneys, and it has its own side-effect. And it has been a super bitch. Without failure, after four to six weeks of treatment, the herpes came back within two weeks like clockwork. I have spent my entire summer dealing with this and I'm exhausted!
But I guess there is no point in being tired, just gotta man up, because, yep, after two weeks off cidofovir, herpes is right back smack on my vulva and clit. *Sigh*.
So this week I start again, but I'm going back to the original IV medication that I took to treat my herpes, Foscarnet. We are trying this one again because it seems to work better, meaning the herpes would come back every four to six months rather than two to three weeks. The only reason I switched was because there was a national shortage of Foscarnet and there was NONE in the U.S. This reads like a saga doesn't it? But it's all true.
So I will get a pick line in my arm this week and set up a makeshift hospital in my house and away we go; three hours a day two times a day; yes, six hours a day, everyday until I heal. And yes, the side effects are basically the same, except that I will have them everyday, rather than three days a week. For sure I wish that it was different, but it's not.
Because my immune system is impaired due to HIV, the doctors believe that there is a part of my immune system that just won't fight off herpes. The herpes has become resistant to all oral medications and creams, you name it, because of long-term use over the years, for about 19 years.
But it is not just genital herpes, the doctor believes that herpes also attacked my nervous system this summer, which caused the nerve pain that I experience in my hands and feet. There are some days when it hurts to walk and I can barley use my hands. For sure it has all been a challenge both physically and emotionally.
But the shame of it all still seems to have a hold on me. When I have to tell someone that I'm on IV medication and then the cause, in my heart I wonder; I wonder about the judgments. I can see the discomfort in their body language and I hear it in their voice as I explain why.
And to have doctor after doctor look at my vagina, cut my vagina for a bioscopy and culture my vagina to determine the level of resistance to medications. I remember the two times that I was hospitalized for herpes, it was all so overwhelming when I had to spread my legs for the team of 10-15 doctors to look. It has all become so much for me.
But at the end of the day, none of this can be undone. Yes, I have these sexually transmitted diseases that have changed my life for the rest of my life. But I must somehow find the strength to go on.
I must somehow forgive myself for the choices I made about my body. I must embrace the goodness that lies within me and not let the bad consume all of me. I must find the strength to continue to live with dignity in such an undignified illness.
Even with dating, I have to believe that there will be someone who will want to be in an honest relationship. Don't be confused, men still want to have sex with me, they just don't want anybody to know that they are with me and I'm NOT having that.
I will admit, it is a lot to deal with daily. But at the beginning of each day, all I can do is put on my Christian Louboutin, and stand tall.
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.
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