Aunty, My Friend Insists She Has HIV

Does she have AIDS Phobia?

Some universities, like the one using this photo in their promo material, offer free HIV tests. But HIV tests can’t help people who won’t accept negative results.

Dear Aunty Jimothy,

My friend and I are uni students in Australia. We went to Bangkok a year ago and got a little drunk and crazy. My friend paid a dancer and had sex with him. She felt guilty later and got very afraid of HIV. She’s had all kinds of tests at home and in clinics. The last test was 11 months after Bangkok. It’s negative like all the rest, but she says she’s always running a fever and has sores in her mouth. She’s scared to death that she has AIDS. She’s so anxious she can barely do her work or have any fun. She spends all her free time on the Internet researching AIDS. Can she have HIV if the tests say she doesn’t? I’ve read about AIDS Phobia. Is this it?

Seeking Answers in Sydney

Dear Seeking,

AIDS phobia? Somebody hand me my smelling salts! Child, how did you get so smart? I don’t know your friend, of course, and I’m not a doctor or a mental health professional, but I run into people with irrational fears of HIV a lot.

If I’m not careful, I spend more time talking to people with phobias than I do handing out empowering information and fabulous flavored condoms.

Can I tell you a secret? Every HIV educator I know tells war stories about people who can’t get over unfounded fears of HIV. Sometimes we have cocktails and dish about it, dear, because it’s that frustrating.

We spend a lot of time keeping up to date with the latest medical information. We read all the current guidelines from the US CDC, the WHO, and other public health agencies. We know all our stats, numbers down pat. We learn how to dispense information that people can easily access and act on.

Then along comes somebody like your BFF and we don’t know what to do. We’re trained to provide information. We’re careful about not saying things that might put people at risk. When somebody is unable to process the information, we feel helpless.

In your letter, you provided details of your friend’s tests. She’s had everything. She started with a PCR RNA test at her doctor’s office two weeks after her potential exposure to HIV. She had two more of the same kind of test at 30 day intervals.

A PCR test amplifies viral RNA to directly detect the presence of HIV in the blood. The tests are highly sensitive and reliable. False negatives are incredibly rare.

She’s also had several fourth-generation antibody tests, both the Rapid, test-strip variety, and lab tests where vials of blood are sent away for evaluation by trained technicians.

While Rapid tests are slightly less reliable than lab tests, both kinds are over 98–99.5 percent accurate when administered in a clinical setting. (Home tests are quite a lot less accurate, even when the same strips are used, presumably because of user error.)

Here’s the thing —

When the tests aren’t accurate, it’s because they’re giving false positives! HIV antibody tests are more sensitive than specific — by design.

People sometimes get confused because of a “window period” that can make antibody tests ineffective for up to several weeks after exposure to HIV. It takes the body a while to ramp up antibody production after HIV establishes itself. Out of a sense of caution, public health agencies advise that antibody tests can’t be considered conclusive until 90 days after exposure .

That 90-day mark is arbitrary and conservative. HIV clinicians will tell you privately (when they aren’t worrying about liability) that if you test negative at 21 days after exposure, you’re negative. You should get tested again at the 90-day mark just to be sure, but you can stop worrying.

That’s it, that’s all.

  • Get a PCR test a few days to a couple weeks after potential exposure to catch an infection really early.
  • Get an antibody test at 21 days or after to be super sure.
  • If you didn’t get the PCR test, do two antibody tests for safety’s sake.

If both tests come back negative, fabulous. I hope you learned your lesson and don’t put yourself at risk again. Do condoms. Do safer sex. Get on PrEP if you and your HIV specialist determine that medication to prevent HIV infection is right for you.

And if the tests come back positive? Don’t panic. HIV treatment is incredibly effective. You need to learn how to cope, but you’re going to be OK.

Next! Aunty can move on.

But that ain’t enough for people with AIDS Phobia —

According to mental health professionals, people with AIDS phobia develop irrational fears that they have HIV or AIDS even though they repeatedly test negative and even after doctors diagnose them as HIV negative.

People with AIDS phobia can often be so convinced they have been infected that all the negative tests in the world won’t ease their fear. They can spend enormous amounts of time on the internet looking for evidence that their suspicions are somehow founded, often times from websites offering anecdotal, outdated, or quack medical advice.

Other people with AIDS phobia develop irrational fears of having sex or of being exposed to HIV in other ways. For example, I once counseled a person who was so afraid of HIV that he wouldn’t use a public toilet. (Public toilets present zero risk of HIV transmission, if you didn’t know.)

There are others who will do absolutely anything to avoid getting HIV even if it is clearly unreasonable or outlandish. They may fear that stains on a piece of clothing are evidence of HIV-infected blood. They may devise seemingly ludicrous ways to avoid infected during sex, falling prey to products or devices that are not only useless but may put them in harm’s way.

I used to spend large amounts of time explaining window periods and toilet transmission odds to frightened people.

Then I realized I was wasting my time and not being helpful if I went beyond the basics. No matter how carefully I explained things to phobic people, they’d come back with more questions or objections to my answers.

They’d keep asking as long I was willing to keep answering. Their questions might change, but their fears wouldn’t let them go. Irrational fear can’t be fought with information. That’s not how it works, child. Aunty Jimothy needed a long, long time to figure that out.

Here’s what mental health professionals have to say

Persons with a debilitating fear of HIV often can be treated with a combination of psychotherapy and medication. While it may help to sit with a doctor or counselor to get all of the facts about the disease, it may be more important to explore the root causes of the fears. In many cases, the phobia will have nothing at all to do with HIV.

Treatment can involve one-on-one therapy, group therapy, or family counseling. In persons diagnosed with anxiety disorder, prescription drugs like Zoloft (sertraline) and Lexapro (escitalopram oxalate) have been known to help.

If you or a loved one has an AIDS phobia, speak with a health professional or community-based AIDS organization for specialist referrals. You may be able to access a local support group either through your community HIV center or a 24-hour AIDS hotline.

I know you’re in Oz, dear, and US info won’t do you any good. So, here’s a list of AIDS hotlines in Australia:

  • Australian Capital Territory — 1800 022 222
  • New South Wales — 1800 737 669
  • Northern Territory — 1800 022 222
  • Queensland — 13 43 25 84
  • South Australia — 1800 022 226
  • Tasmania — 1800 675 859
  • Victoria — 1800 889 887
  • Western Australia — 1300 767 161

For people outside the US and Australia, just Google AIDS (or HIV) hotline, plus the name of your country. Good info will come up.

Whatever you do, if fear of HIV is eating at you, get help.

You don’t have to sit at your computer asking strangers to tell you that you’ve probably got AIDS. If your doctors are saying you don’t, but you don’t believe them, you may very well have a phobia.

If it causes you a lot of anxiety and pain, you can get better. If you’re feeling ill all the time, it might be anxiety, or it might be a medical condition other than HIV that your phobia is preventing you from taking proper care of. You can do something about it. Yes, child. You!

Reach out to the right people and start to get it under control. Don’t make Aunty Jimothy clutch her pearls. The world ain’t ready for that!

That’s another Aunty Jimothy column on Medium, guys and girls. Got a question? Post it under this story or email jfinnwrites@gmail.com and she’ll do her best to crank out some pearlescent balls of wisdom.

By the way, I’ve got a whole bat cave full of lesbians, trans guys and girls, and kinky polyamorous bisexual chicks. So when you ask Aunty Jimothy, you’re tapping into a lot more than just Dame Edna’s cranky nemesis.

Ask anything! Love, sex, dating, hooking up, Tinder and Grindr culture, and HIV/STD concerns. Life with your straight family. Coming out. Or not.

This Old Aunty has the Answers. Somewhere. If I can just remember where I left my purse.

Want more Aunty Jimothy? Read all her columns!

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