March #142 : Diagnosis: Stigma - by Annette Lizzul

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Diagnosis: Stigma


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March 2008

Diagnosis: Stigma

by Annette Lizzul

Having lived with HIV for more than 20 years, I’ve seen my fair share of doctors—whose sensitivity has ranged from good to bad to downright ugly. Back in the ’80s, when doctors (and I) didn’t fully understand the disease, I was timid and even sympathetic whenever a physician went into full-metal-jacket decontamination mode before entering the examining room. I would even feel grateful when a doctor showed me compassion or kindness. I’m stronger now, hardened by time into a pillar of steel. But even steel can be melted. Recently, I was hit by a bolt of discrimination—from a plastic surgeon.

He had been recommended by my infectious-disease (ID) doctor, after an accident left a three-inch gash in my forehead. Let’s just say it involved cooking, wine and a dropped utensil. I didn’t have the time or energy to visit the emergency room. Besides, what’s a small cut when you’ve survived CMV retinitis, encephalopathy and mega HAART side effects? But when I woke the next morning, I realized that I really should seek treatment.

It’s always an emotional ordeal to see a new doctor and fill out their paperwork: Heart disease? No. Smoke? No. Sexually active? Hopeful. Other conditions we should be aware of? Yes. List of medications? I carry an index card naming of my meds and always just attach it to the page.

Handing my paperwork to the receptionist, I awaited her expression. I saw brief shock, then astonishment, then That Look of Fear. I waited in the examining room for more than an hour, convinced they were scheming to get rid of me. I used to endure these situations without saying a word. But now, I always storm up to the reception desk and ask whether I’ll have time to order pizza or Chinese while I wait.

The doctor came in, dressed as if he were entering a quarantine station. I looked him in the eyes—the only things sticking out of his mask—and told him that I wanted him to be aware of my status. Then, trying to keep it light, I said he could get by with universal precautions—the Andromeda Strain gear was unnecessary. I smiled and said that he’d come highly recommended.

What followed was the probably the most stunning experience in my life with HIV. The doctor told me that he was “sick and tired” of my ID doctor’s medical group sending him “those people.” I reminded him that I was one of “those people.” I also reminded him that as a plastic surgeon, he is routinely in contact with all sorts of biological agents, not just HIV. I spewed statistics from the CDC about antibiotic-resistant bacterial infection, MRSA and other dangers.

Taken aback, he stammered that he really did want to treat me. Then he asked me how I contracted HIV, a question I thought inappropriate. He tried some damage control by saying that he understood that I was an innocent victim—a comment that only infuriated me more. He tried to explain that it was his wife who had told him not to take HIV-positive patients. She didn’t want him bringing the virus back to his family. And this from an MD!

He looked at my wound, said it was too late to treat and pressed tape over the cut, almost completely covering my eye. My visit, he said, had indeed convinced him not to accept any more HIV-positive people. For the community’s sake, I was grateful. But the wounds on my forehead and in my heart were leaving deep scars—of the ignorance that surrounds HIV after all this time.

I wrote to the medical board, stopped the doctor’s $200 credit-card charge and had myself a good cry. The board decided it lacked evidence for a penalty. All I wanted was an apology from the doctor. I didn’t get that, but I’m proud that I stood up to the indignity. The doctor left his mark on me, but I plan to go on living for a long time, with fewer permanent scars.

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  comments 1 - 15 (of 53 total)     next > >>

Lynn, MO, 2009-03-20 21:39:57
It is increasingly hard to find Doctors that will treat me since I am positive. I have been going to the big city since I can credit the local quakcs for my downward spiral and failure to ever test me for hiv, let alone recomend that I should be tested after having blood transfusions. One Dr.canceled my appointment, One told me not to come back, one made some very crude cruel comments, and one referred me to a Dr. that doesn't even treat the area I needed all this year.

Dale, Tucson, 2008-06-21 19:35:07
I agree it is very hard to trust anyone with such personal information, but there are occasions that it is nessasary ie I just this past year got valley fever and had to tell the paramedics of all my problems. they seemed fine except when I told them I had HCV as well and they were drawing blood the poor girl looked so worried.

dave keiser, fort lauderdale, 2008-06-19 07:01:05
I'm like you,Idon't take any crap from health professionals. I've been positive since 1986 and remember when hospital staff wouldn't pick up food trays after a meal. My favorite time is when I go to a emgergancy room and want to get fast service. After seeing the triage nurse when I get there I start coughting without covering my mouth. I get fast service

Tina, Chattanooga, 2008-05-18 12:15:27
I've been very lucky. The ladies at Chattanooga Cares are great. Every Dr. they have sent me to have been understanding and kind. Hearing horror stories like this sickens me. Stupidity is a widespread illness.

bearby, birmingham, 2008-04-29 17:01:46
I too felt that kind of stigma after my dentist came at me wearig much the same attire after learning that I was poz . Well tha was long ago and now I have an hiv savy dentist that has delt with my status with nothing but respect . I have to say BRAVo to you for standing up for your self and the rights of all of us that are poz in dealing with such situations. P.S. I also was poz for many a year but then when the AIDS disgnosis was determined it seemed to open a lot of med & dental doors .

MILDRED MUNOZ, NYC, 2008-04-19 09:39:47
I find that people who have very,very high schooling education have no street smarts. They live in this bubble of being so educated that they don't open their minds to anything not written in books. I think that making a list of all these Doctors that ditch us is a great thing it. HIV+ is not a plaque.

Mildred Munoz, NYC, 2008-03-28 09:03:22
I am with you. I also have HIV+for 18 years and have come accross so many of those Doctors. How they ever decided to become doctors with fear of infectous Deceases I will never know. Here we are honest and get a kick in the A--. Thank God I finally found a Doctor that sends me to other Doctors in NYC who specialize in HIV+ patients. Since then I have had no trouble. BUT, I had a hard time finding a Dentist, for being honest, but finally found one after 5 tries.

Harry Jedlicka, Austin, Texas, 2008-03-27 20:14:01
I am living with HIV for close to 25 years when the name changed from GRID to HIV/AIDS. Stick up for yourself. The ignoramous people are the uneducated. You will live a long life. My heart hurts for you as I have a wonderful Doctor Team willing to touch me, love me and give me hope. God is my helper but I too have been mocked as a leapor. God be with you and if you need call me at 512-460-3029 or 512-924-6772. Love and tolerance is what this world needs. God Bless your soul!!!!

Kevin, Phoenix, 2008-03-25 10:44:18
To Jay in NY. Don't be afraid by articles like this. This incident was a rare and isolated case, and it's not typical of healthcare professionals. You're not alone, and the meds are not horrid. I take truvada and kaletra and I feel great! I recommend you find an HIV support group and go a few times. You'll find that you're not alone, and that people have great lives despite HIV!

Jay, New York, 2008-03-22 22:29:28
Im really scared - I feel like Im on the edge of a cliff ready to fall. I have HIV, but have really good numbers and therefore can "pass" for healthy (being African American - pun intended), yet I hear these stories and others of the horrid nature of the meds and wonder, is this what waits for me? Being single, how do I deal with this on my own? Will things change in the future when I need them, or will I face discrimination on all levels? Still Hoping for the best. Jay

gd knox, , 2008-03-21 12:20:31
I understand your frustration... I literally had to drag my leg around for two years before I could find an orthapedic doc to give me a true diagnoses..I must have had 8 different this time I had ground mt hip joint down 2.5 centimeters...I had the hip replaced and now all is ok with it.but now i'm having simalar probs with a knee.. vascular necrosis ..this time i'll keep a recorder handy...just in case......

Kevin, Phoenix, 2008-03-21 10:38:58
Bollocks, you are an idiot. Hopefully you were just trolling for reactions and you don't actually work in healthcare. You need to read up on Standard Precautions, THE international standard in healthcare(just in case you are an ignorant healthcare worker). Here's the link I have a poz friend who recently had open-heart surgery, and the heart surgeon had NO PROBLEM with his HIV status! Deal with it.

L. Andrews, , 2008-03-21 07:01:32
Yep, stigma is still alive and well. I was recently refused dental treatment. Apparently I should have had thicker skin (or so I was told) as I WAS TO BLAME for this discomfort - I was the one that chose a dentist different to my regular as this destist was not from the inner city area? Seems location dictates acceptable idiocy. As for comments made by Bollocks. If that dentist fears "germ" contamination, he is obviously not trained in safe dental practices and is a health risk to all.

Jaded Heart, New York, 2008-03-19 13:34:58
What I would like to ask this prejudiced doctor is, "What if this happened to his daughter?" Would he feel differently? Would he have treated Annette that way? HIV doesn't discriminate and that is something everyone should keep in mind! The judgers shall be judged!

Annette, , 2008-03-17 17:29:11
Mr "Bullocks", your comments were discraceful. You are the one who is infected with a plague called "ignorance". In fact, it was not his "right" to treat me, it was his "duty" as a doctor, who swore an oath. He was not at any risk "touching" me - as every doctor uses gloves. HIV is not "airborn" or easily contracted. Obviously, you are a complete ignoramous. But, you are entitled to your opion. I only hope to God that you do not reproduce your imbicle gene into society.

comments 1 - 15 (of 53 total)     next > >>

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