A Guide to Fear of HIV / AIDS: What it is and how to find relief 

If you’ve ever worried about contracting HIV/AIDS or potentially spreading the virus to others, you are not alone. 

Over the last few decades, people with OCD who have intense fears about health and contamination have had no shortage of illnesses to worry about, from AIDS and Ebola to H1N1 and COVID-19. 

To understand the fear of HIV/AIDS in particular and to find relief, let’s take a closer look at this specific fear and its relationship to OCD, phobias, and anxiety. 

What is a fear of HIV / AIDS?

People facing a fear of HIV/AIDS often feel compelled to take extra precautions to prevent exposure to viruses or contaminants. They may believe they are at risk for the illness despite no real evidence to back up their fears.  

If your OCD has latched on to HIV/AIDS as a recurring obsession and you are frequently engaged in compulsions to deal with anxiety, such as online research or repeated medical testing, then you understand the significant impact that OCD can have on your life. 

Taylor Newendorp, LCPC, licensed therapist and NOCD’s Network Clinical Training Director, has treated many people with OCD who fear being exposed to or spreading HIV. Some therapy members have even felt the need to get tested every day to feel reassured they are negative for HIV. Newendorp says that an extreme sense of hyper-responsibility and desire to protect others, even if it means severely restricting one’s own life, is often underlying OCD behaviors related to the fear of HIV. 

“It comes back to someone not wanting to put themselves in any kind of position where they could transmit any sort of illness to other people, especially people they care about,” he says. 

It can also be driven by a significant fear that one may already have HIV, even if there are no symptoms that indicate that it is present at all. At its strongest, this fear can lead people to distrust medical tests, even when they continually receive negative results.

Common obsessions:

• “What if I have HIV and don’t know it?”
• “What if I pass HIV on to my loved ones?”
• “I need to be absolutely certain I have not contracted HIV since my last test.”
• “I will be responsible for my loved ones getting HIV unless I stay vigilant.”
• “What if one of my sexual partners had HIV?”
• “Did the nurse completely sanitize that needle? What if it was used before?”
• “What if my blood test was wrong and I have HIV?”
• “Those hotel towels seemed dirty. Could it have been blood?”
• “I have this symptom and I read before that this could be a symptom of HIV. Is that what it is?”

Common triggers:

• Touching anything that one suspects could contain blood or other bodily fluid
• Seeing a used needle from a distance and thinking “did I touch that?” 
• Being around healthcare workers
• Visiting doctors’ offices
• Standing or walking near someone who seems sick
• Watching films where characters have HIV
• Being near people with tattoos (fear of needle contamination) or who are wearing a bandage
• Donating blood or having blood drawn for medical tests
• People discussing sickness or viruses in general
• Hearing someone cough
• Changes in bodily functions they may have researched as a possible symptom of HIV
• Innocuous physical sensations or symptoms of illness

Is it normal to have fears about contracting HIV?

Yes. As with any potentially deadly virus, many people fear contracting HIV. Constant media coverage during outbreaks such as the AIDS crisis in the 1980s and 1990s, paired with the reality of a virus that has killed millions leads to reasonable worry for the average person. 

Most people, however, are able to live with confidence in the evidence and knowledge that they have, rather than feeling ruled by their fear and uncertainty about contracting illnesses like HIV/AIDS.

Yet for people with OCD, fear of HIV/AIDs is extremely heightened and often interferes greatly with their day-to-day life. It may feel constant, or intensify when the illness is at the forefront of public conversation. 

“OCD is highly suggestible. It’s very easy for someone with OCD to get stuck on the fear of whatever is going on in our world that is causing stress or concern. People with OCD personalize national crises believing they have or will take hold for them,” explains Newendorp. 

How can I tell if it’s OCD, anxiety, or a reasonable health concern?

Someone who fears HIV in connection with anxiety or reasonable health concerns may, as a precaution, get tested once per year or after engaging in one of the primary ways the virus is transmitted (sharing infected needles, having unprotected sex, and receiving contaminated blood transfusion). If someone is often worried about events that seem far outside the realm of possibility or outside of the three primary ways HIV is transmitted, this may be a sign of OCD related to contamination or health concerns. 

How can I tell if it’s OCD and not a Specific Phobia?

OCD is often called the “doubting disorder,” because it causes a perceived need for certainty in an area where certainty is not possible. When HIV is the subject of such fears, uncertainty feels intolerable and people with OCD will go to great lengths to confirm that they are not infected. These behaviors result in time-consuming behaviors and high levels of distress, as doubt can creep into the narrowest of margins, even causing people to distrust repeated medical tests.

In general, if you’re experiencing intrusive thoughts, images, feelings, or urges that cause significant distress or lead you to and engage in safety-seeking compulsions to alleviate the distress, this is a good indication that you’re struggling with OCD.

Common compulsions performed mentally or physically by people with OCD fear of HIV include:

• Excessive hand washing and showering
• Avoiding public restrooms
• Not getting bloodwork or giving blood
• Avoiding the color red out of fear of blood
• Getting multiple tests for HIV despite not engaging in high-risk behaviors for infection
• Not engaging in safe sexual activity due to fear of contracting or spreading the virus
• Not hugging or kissing loved ones due to fear of contamination
• Avoiding swimming, public showers, or public bathrooms
• Wearing gloves due to fear of contraction of HIV
• Researching symptoms of HIV on the internet and checking throughout the day if symptoms are present
• Avoiding hypodermic needles 
• Avoiding loved ones for fear of transmission 

How to overcome a fear of HIV / AIDS

Contamination OCD related to HIV can be debilitating, but it is highly treatable. If you’re struggling with OCD, As an OCD specialist, I’ve used ERP to help many people regain their lives from OCD. I encourage you to learn about NOCD’s accessible, evidence-based approach to treatment with the NOCD care team to learn how a licensed therapist can help. At NOCD, all therapists specialize in OCD and receive specialty training in exposure and response prevention (ERP) therapy. 

ERP works by carefully, gradually exposing the person to their obsessive fear. In the case of fear of HIV, patients are obviously not exposed to actual HIV but rather guided to resist the urge to engage in compulsions.

Exposures done to treat a fear of HIV / AIDS in OCD may include:

Learning to resist unnecessary medical testing:

If you compulsively visit multiple medical specialists to get tested for HIV on a regular or even daily basis, one exposure your therapist might try with you is gradually reducing how often you test for HIV. A question Newendorp poses to clients is, “Are you willing to actively have that obsessive fear and anxiety that you might somehow have HIV? Are you willing to experience a really strong urge to go get tested again, yet resist it?” People facing a fear of HIV begin to get comfortable with what it means to experience an obsession but not act on it. 

Changing behavior around research:

Since searching for reassurance in online health content is so common, a typical exposure might be gradually shifting how you engage with health content about your related fear. 

If you avoid HIV-related articles altogether, an exposure session with your therapist might include reading one or two articles in a controlled environment, guided by your therapist. If, on the other hand, you consume health content in excess to reassure your fears, your therapist might work with you to reduce the number of articles you read per week.

For people who have resisted compulsions in treatment over time, Newendorp says that fears can fade as they are better managed. “Patients can start out with fears that sound like constant alarm bells going off and go on to feel like nothing more than blips on their radar.” 

Reducing compulsions, or response prevention, is the solution needed to break the OCD cycle. With a trained therapist, you can learn how to start reducing your compulsions and experience more joy, freedom, and empowerment. You can live the life you want, not the life that OCD wants you to live.