March #142 : Diagnosis: Stigma - by Annette Lizzul

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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 16 - 30 (of 53 total)     << < previous next > >>

Joe, Hackensack, 2008-03-16 20:56:28
YES, my dear Annette, I am saddened and sickened to hear these kinds of hurtful and ignorant reactions coming from supposedly educated members of the medical field. With so many of my friends in similar situations, I eventually hear similar encounters with some of their doctors as well. Perhaps we should data base a list of heartless doctors and force them all to see Robin Williams in PATCH ADAMS! Through the pain you always remain strong and continue to serve as a role model for so many! xo

Bollocks, , 2008-03-16 05:36:32
I know you don't want to hear this, but the doctor had every right not to treat you. You're carrying the worst plague on Earth, and he had to weigh the risks of putting himself at danger of catching it from your open wound vs. protecting his own life at the sake of fixing a something on you that wasn't life threatening. You would be better off trying to see it from the POV of those uninfected as well as your own.

Vickie, NYC, 2008-03-15 06:55:36
I must agree that the stigma against people living with HIV amongst the medical profession is alive and well. The only time I disclose my HIV status is when I visit a new doctor. It is very uncomfortable to disclose this to virtual strangers. Trust and understanding is very important to me. However when I visit a new doctor I have no choice but to trust that I will be treated with the same respect as everyone else. Sadly, this is not always the case.

kim, , 2008-03-14 11:42:01
This summed up my experiences and feelings, although, not from my ID Doctor - He is the best - but every other area where my HIV drizzles down into - thank you for speaking out.

Cynthia, , 2008-03-13 23:32:20
Annette I am proud that you stood up for yourself. Just when you think stigmatization has subsided, it hits you square in the heart. Thank you for sharing your story.

Lisa, San Diego, 2008-03-13 23:26:54
Un-freakin-believable! Being an insuling dependent diabetic for the last 30 years and HIV postive for 2 years, I know that doctors ARE NOT GOD. Keep reporting him, write him letters, post something in your local paper. What he did was unethical and against the oath he took when he became a doctor.

Jon, , 2008-03-13 09:57:29
Let's get him! ;o)

RedDragon, New York, 2008-03-12 04:07:55
You go girl. The event may have made you sadder, but it had made you stronger at the same time. This is not the beginning and it will not be the end of this type of treatment for so-called professionals in the medical field. Live Long and Live Strong.

James, Minnesota, 2008-03-12 03:05:23
I'm so sick of hearing about Stigma. I work with doctors and I can attest to the fact that a lot of them do hold strange, out of date notions on people living with HIV. We need to be strong and we have to stand up for ourselves. I've gone head to head with docs who have made inappropriate comments about gays and people with HIV. I'm not scared of them. Any doc that discriminated against me would be in for a rough ride. I wouldn't rest until I contacted every advocacy and lawyer firm.

Hannah, Greensboro, 2008-03-11 22:04:54
I'm with Barry from Southern Vermont on this--when I had run across a situation of seeing a doctor where I may be in another area, if they don't ask, I don't say. I did have the misfortune of an eye doctor who changed the dx code on his billing once I disclosed to him I was positive. I complained and filed with my insurance company. They claim that it "was" the reason for the visit. I'm black and so was the Dr---you do the math.

katy, , 2008-03-11 16:54:33
i am hiv positive, do i have to inform my dentist of my hiv status? i understand they take nessesary precausions, when treating every apprehensive disclosing to my dentist, as i have heared some horror stories about how they treat hiv patients..can i carry on recieving treatment without disclosure? as to my understanding they steralise everthing when treating every patient? will i be pricecuted for not disclosing?

barry, southern vermont, 2008-03-09 22:03:16
been poz for 12 yrs.Had not seen dentist since.allways worried about reaction.MY DR SOLUTION? DONT TELL THEM ANYTHING!They should be taking all precautions. after all these years of being told i was the one who had to be carefull it felt pretty good letting someone else be carefull. First time in 12 years my teeth are cleaned and sparkly.I know some may say different but It never came up during the pre exam. they didnt ask and i didnt tell.I wonder if I "looked poz" would they have asked?

Nathaniel Johnson, Cincinnati, 2008-03-09 19:24:50
I have been living with HIV over 20 years as a black man and at times blamed racism for what I now feel was HIV related stigma and discrimination. Doctors can at times aperate as if we owe them a favor. I currently do not have insurance and have to depend on public health services so customer service does not exist.

Carol Allison, Bement, 2008-03-09 18:58:53
We recently left a city of abut 250,000. I was amazed that twice my husband was treated rudly and inapproperatley while being treated at a local teaching hospital. Once by a I.D. doc and once by an E.R. doc.. The ID doc referred to him as one of those people and the ER doc came into the room dressed as if we had the plague. He has since backed away from being treated for his HIV, not good but I can well understand. Hopefully he'll return to treatment soon.

Snowangel, Mass, 2008-03-08 21:46:12
Annette, Good for you for standing up to this jerk and having the strength to write the article. I have been poz for 15 yrs but have had precancerous cells on my cervix since forever. When going to a new GYN she informed me that I needed to get a hysterectomy and that I could not and should not ever have kids because of my HIV not the pre-cancerous cells. I only saw her twice, thank God and went on to have 4 healthy kids and no irregular pap smears.

comments 16 - 30 (of 53 total)     << < previous next > >>

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