HIV OCD: Separating Facts from Fears

Does the thought of “catching” HIV and unwittingly spreading it to someone else scare you to the point of feeling physically ill at the mere thought of it? Does this fear translate into your everyday life, causing you to “hole up” in your home for fear of being “contaminated?”Are you deathly afraid of touching, kissing, or being intimate with someone for fear that you will contract this life-altering disease? Well, if the thought of contracting HIV worries and even scares you a little, you are not alone. 

However, if this fear or the stress and anxiety surrounding it makes you physically ill, causes you to be depressed, or negatively impacts your life in some way, there is a good chance you may suffer from HIV OCD. If you believe you may be suffering from HIV OCD, but are unsure, you have come to the right place. In this article, you will learn what HIV OCD is, how to separate facts from fears when it comes to this condition, and how to address it in a way that will help you reclaim your life.

What is OCD?

Obsessive-compulsive disorder – or OCD is considered an anxiety disorder that causes unwanted and repetitive thoughts, fears, worries, visions, emotions, and urges (obsessions), and/or rituals and routines (compulsions). OCD can be extremely disruptive in a person’s life, causing damage to their self-esteem and self-confidence, relationships, career prospects, and so much more. There are many types of OCD, such as meta OCD, racism OCD, contamination OCD, hoarding OCD, and health OCD. HIV OCD is yet another type of OCD, although it is not as known as other types of OCD. OCD is a real condition just like any other real condition (i.e., diabetes, asthma, depression, anxiety, etc.). 

Although it is often the butt of jokes, OCD is no laughing matter. It is serious and can be heartbreaking and lonely without OCD help. There is no “cure” for this condition, however, there are ways to effectively treat it. The most common treatment for OCD involves psychotherapy and/or medication, although most OCD sufferers also use a variety of natural remedies and self-help tools, like Impulse Therapy, an online OCD treatment program, to help them gain control of their OCD symptoms.

Is HIV OCD The Same As Having HIV?

No, it is not. 

HIV OCD is the fear of contracting or getting HIV while having HIV means you actually have the virus. 

Now, it is important to understand that it is possible to have HIV and still suffer from HIV OCD. How? Well, people with HIV can have such an intense fear of passing HIV on to other people that it constitutes an OCD diagnosis. In other words, an excessive or extreme “fixation” or obsession with passing HIV on to others (one that consumes a person’s life and causes their quality of life to decline) could be a form of HIV OCD. In this scenario, HIV and HIV OCD are considered a comorbidity. 

However, in the medical sense, HIV OCD and HIV as a virus, are not the same things. One is fear and the other is the actual condition. 

What is HIV OCD?

With COVID-19 looming, and the continuous threat of Ebola and H1N1 infections, people with blood-focused, health, and/or contamination OCD have been dealing with a lot. Thus, it makes sense that many of these individuals fear contracting HIV, and later developing AIDS. To understand what HIV OCD is, and to find ways to ease the stress, anxiety, fear, and OCD symptoms surrounding it, it is important to take an in-depth look at how it is linked to phobias and myths, and how it can manifest in an OCD sufferer’s life. 

HIV OCD is literally how it sounds – an obsession or fear of contracting the human immunodeficiency virus (HIV). It is considered a common type of OCD that focuses on the contamination of one’s blood. A person with this type of OCD is afraid of their blood being contaminated with the virus that causes HIV. Many of these individuals also fear passing the virus to other people. HIV is the virus that eventually transforms into AIDs, so people with HIV OCD are also scared of developing full-blown AIDS from the HIV virus. 

Because there is no cure for HIV or AIDS, OCD sufferers, especially those who suffer from health or contamination phobias, tend to view HIV as a “scary monster lurking in the background, waiting to jump out at them when they are not looking.” This fear is very intense and very real for these OCD sufferers. There is still a lot that is unknown about HIV and AIDS which fuels myths, stigmas, labels, misconceptions, and misunderstandings. 

These untruths and inaccuracies can trigger or worsen stress, anxiety, and fear surrounding HIV OCD. Excessive HIV worries can cause some OCD sufferers to believe they have the disease when they really don’t. More specifically, people with HIV OCD may link symptoms like fatigue, headaches, and achiness with HIV when in reality these symptoms may stem from not getting enough sleep, not eating well, or another illness.

Is HIV OCD the Same as Contamination OCD?

Yes and no. 

HIV OCD does involve a fear of being contaminated and “catching” something as a result of this contamination. However, contamination OCD is broader, encompassing more than just a fear of contracting HIV or AIDS. With contamination OCD, the fear is pervasive, meaning that it extends to all illnesses, viruses, diseases, etc., in which you can “catch” something. 

Still, both HIV OCD and contamination OCD are very similar. More specifically, the OCD symptoms in both forms of OCD are similar, such as fear of being stuck with a “dirty needle” or a fear of blood and bodily fluids. So, in essence, HIV OCD could be considered one aspect or part of contamination OCD, but not necessarily the condition. HIV OCD is a type of OCD in itself.

Is It Normal To Have a Fear of “Catching HIV?”

Yes, it is. 

Most people are afraid of contracting an illness, infection, or disease that would alter their lives or could *potentially* end their lives. A fear of contracting HIV is often included in this category. The real threat of HIV and AIDS, continuously reiterated in newspapers, on news programs, and in society in the 1980s and 1990s, coupled with HIV-related mass deaths and the uncertainty surrounding its transmission, only served to heighten one’s fear of contracting the virus.

Although, this fear has diminished for the average person due to more information and research on HIV and AIDs, for some OCD sufferers it remains a serious and deadly threat so much so that they have become “fixated” on the fear that they have it, will catch it, or will pass it onto someone else. This fear consumes them to the point that they spend the majority of their time “sanitizing” their home and/or themselves or avoiding others to prevent them from contracting it or passing it on.

People zith HIV OCD tend to refrain from physical intimacy, such as kissing or having sex for this same reason. An intense fear, worry, concern, stress, or anxiety of becoming HIV-positive takes center stage in these individuals’ lives to the point that they are unable to complete tasks and engage in the real world. Many of these individuals require constant reassurance that they do not have HIV. But this reassurance only goes so far until re-triggers their stress, anxiety, worries, and OCD symptoms. Then, more reassurance is needed to provide relief to the OCD sufferer.

Is a Fear of Contracting HIV a Type of OCD?

Yes, a fear of contracting or developing HIV is a type of OCD.

This type of OCD is HIV OCD.

People with HIV OCD experience strong urges to “protect” themselves from being exposed to the virus or contaminants that could lead to contracting HIV. These individuals are convinced that they are at risk of “catching the virus,” even though it is highly unlikely. In other words, there is no reason to believe that they have or could get the disease based on their current situation. Thus, their fears are unfounded, yet, they are convinced that there is a real possibility that they are justified in some way. 

Like other OCD sufferers, they know that they are unlikely to “catch HIV,” but their fears persist. It is common for people with HIV OCD to take frequent HIV tests and/or suggest to their doctor that they may have the condition based on their symptoms (which have nothing to do with HIV). These individuals frequently get tested and see their doctors out of a need for reassurance that they do not have HIV or AIDS. 

These individuals also tend to feel “hyper-responsible” for the welfare of other people (i.e., protecting others from contracting HIV), even if it means avoiding other people. All of this leads back to an intense OCD fear of getting HIV and passing it on to others. Some people with HIV OCD develop a distrust of medical professionals, their OCD therapists, and medical tests when they are not diagnosed with HIV or AIDS, when their doctors tell them they do not have the condition, and/or when test results come back negative. 

What Are Some HIV OCD Triggers?

Listed below are some things that can trigger HIV OCD:

• Touching blood or other bodily fluids – or things containing blood or other bodily fluids
• Questioning if you somehow touched a “used needle” without you knowing
• Spending time with healthcare workers or techs who handle blood or bodily fluids 
• Being in a doctor’s office with sick people
• Standing, sitting, walking, or being close to or beside someone who appears ill (i.e., coughing, sneezing, etc..)
• Viewing a video, movie, or television show where one or more people or characters have HIV or AIDS 
• Being in the same room as people with tattoos out of a fear of accidentally being contaminated by the tattoo needle
• Being close to a person who is wearing a bandage over a wound
• Donating blood 
• Having blood drawn for medical tests
• Listening to people talk about being sick, or various illnesses (i.e. viruses) going around
• Listening to someone cough or sneeze
• Comparing your symptoms to the HIV symptoms you found on Google

What Are Some Common HIV-Related OCD Obsessions?

Listed below are some common HIV-related OCD obsessions:

• “What if I have HIV and don’t know it?”
• “What if I pass HIV on to someone I care about?”
• “What if I unwittingly passed on HIV to someone else since my last HIV test?”
• “Should I get tested for HIV again?”
• “Will my friends and loved ones ‘catch HIV’ if I am not cautious and stay vigilant?”
• “What if my partner has HIV and gives it to me?”
• “Was the needle the nurse just used to take my blood clean?” Or, was it used on someone before me? Will I get HIV due to a “dirty needle?” 
• “Could my negative blood test be wrong and I actually have HIV?”
• “What is on these sheets, pillowcases, bedspread, or towels? Could it be blood, urine, feces, saliva, or other bodily fluids?”
• “I am experiencing intense fatigue (insert the symptom), I read that this is also a symptom of HIV… Does that mean I have HIV?”
• “I will die if I contract HIV.”

What Are Some Common HIV-Related OCD Compulsions?

Listed below are some common HIV-related OCD compulsions:

• Excessively cleaning or “sanitizing” your home, car, or workspace
• Excessively bathing or washing your hands
• Using a mask when it is not necessary like in one’s home
• Refraining from touching other people, including your partner, child, close friend, or loved one (i.e., handshakes, hugs, kisses, sex, cuddles, foreplay, a child with a runny nose, a sick child, etc.)
• Seeking constant reassurance from doctors and loved ones that you do not have HIV or AIDS
• Self-isolating or avoiding people out of fear of contracting or passing on HIV to other people
• Repetitively taking HIV blood tests 
• Asking for HIV medications even though you have not been diagnosed with the disease 
• Avoiding sharp objects, Band-Aids, or anything that may have come into contact with blood or bodily fluids
• Continually checking for wounds or blood
• Refusing to sit in a chair or on a couch that someone else has sat on
• Refusing to walk or stand too closely to someone else
• Excessively watching news programs or reading articles on HIV or AIDS or people who have the condition
• Avoiding shows, movies, or books that have characters with HIV or AIDS
• Avoiding items that are red in color because they resemble blood
• Googling HIV symptoms to ensure that you do not have them
• Scrutinizing the behavior of dentists, doctors, or other professionals, who have likely come in contact with blood – yours or someone else’s

Will My Fear of Contracting HIV Lead to Me Having OCD?

It could. 

Everyone has a fear of contracting a life-altering or deadly disease. That is normal. However, if this fear gets out of control and begins to consume your life, then there is a possibility that it has turned into or will turn into HIV OCD. In other words, if your fears, worries, stress, anxiety, and/or urges have become so persistent, intense, and intrusive that they are negatively affecting your life, health, and well-being, and if you are unable to stop them, then that is likely a sign that you are experiencing HIV OCD. If this is the case, you will likely need to seek OCD treatment to stop your HIV-related obsessions and/or compulsions.

Is There Any Research on HIV OCD?

Yes, however, research is sparse.

Research on HIV OCD is limited, however, a few studies on HIV/AIDS OCD have found that this type of OCD can cause significant distress. 

For instance, a 2021 study found that people with HIV/AIDS OCD have an elevated risk of emotional turmoil. These individuals may experience emotional shock (i.e., loathing, social isolation, etc.), a fear of the consequences (i.e., a fear of death, loneliness, or disgrace), guilt (i.e., regret, shame, etc.), discouragement (i.e., suicidal ideation, disappointment, etc.), or strong urges to “escape from reality” (i.e., denial, isolation, or avoidance).

Understand, however, that a past study suggests that an obsession with HIV/AIDS could be challenging to treat. According to this study, a behavioral treatment approach (i.e., exposure and response prevention (ERP) therapy) is ineffective in treating this type of OCD, primarily due to an ever-present fixation on contracting HIV/AIDS and passing it on to others. So, researchers concluded that more research is needed to understand this type of OCD and to develop an effective OCD treatment program for it. 

Conversely, other researchers found that behavior treatments, specifically, cognitive-behavioral therapy (CBT) and exposure and response prevention (ERP) therapy, are beneficial in reducing HIV OCD symptoms for up to 3 months after the end of therapy.

Another study suggests that a combination of psychotherapy (i.e., exposure and response prevention (ERP) therapy and cognitive-behavioral therapy (CBT)) and medication like SSRI antidepressants (fluoxetine) produces the best treatment outcomes for people suffering from HIV/AIDS OCD.

What Is It Like to Live With HIV OCD?

The best way to understand what it feels like to live with HIV OCD is to hear from others who are living with it or who have experienced it in the past.

Listed below are real-life testimonies of people who understand what it is like to live with HIV OCD:

• “Every time I got a cut I assumed that I cut myself on something that had blood on it, or if someone else had a cut anything they touched was pure HIV-infected. I also believed that if I got blood near my eyes, nose, etc., I would automatically be infected with HIV. And, forget about sex – that was a no-go. But, now I do not have to scrub my body like a ‘crazy person’ after sex. Don’t get me wrong, I still get scared, particularly around cuts, or people who are at high risk for viruses, but I just ignore those pesky thoughts, and tell myself two things: 

• I am not going to get HIV. In the history of the virus, no one has gotten HIV from cutting themselves on something, a toilet seat, rubbing their eyes after touching a surface that MAY have had a speck of dried blood, shaking hands with someone, who has a cut on their hands, etc…Why would I be the first person to get it?

• Even if the 1/trillion likelihood (yes it’s literally mathematically in that ballpark) that I get HIV… I will be fine. I will get a job and that job will have health insurance. I can live with HIV without complications. I can also date someone who will accept me for HIV and all. Lastly, there is a chance that if I get HIV, it will eventually become undetectable or cured within my lifetime, so stop worrying about this shit.

  This along with therapy and meds are good options, so good luck. I went from wearing gloves to bed and not being able to leave the house to having sex (condoms of course) and being friends with someone who I’m pretty sure has the virus and not minding their presence, and you can too.”

• “Today, I had my first day starting at a new part-time job, so I can make money while I also study full-time. At the end of my shift when I was going home, I realized my finger hurt like I pricked it or something. I feel like I see a dot in it, and now, I’m terrified of it being a needle.

  I am terrified because my OCD is flaring up now, and is trying to scare me into believing that I may have HIV. I already called the doctor and covered it up by telling the receptionist that I would like an anemia test. When they contact me tomorrow, I will tell them I want an HIV test. I’m so scared now. Can you get HIV from pricking your finger a bit, and it is not even bleeding?

Response For Fellow HIV OCD Poster

“Unless you get poked by a needle with blood, there is almost no chance you will get HIV. HIV is also very treatable. Charlie Sheen had unprotected sex with a porn star after being diagnosed with HIV, and the porn star did not even get it because the HIV medications he was taking made the virus undetectable in his system, and thereby, untransmittable. I remember having these kinds of thoughts before. Just get tested. I got tested like every STD test for peace of mind many times. That is what helped me.”

How is HIV OCD Treated?

HIV OCD is treated like all other types of OCD.

The first line of treatment for all types of OCD is psychotherapy, namely cognitive behavioral therapy (CBT), exposure and response prevention (ERP) therapy, acceptance and commitment therapy (ACT), and/or medication, namely SSRI antidepressants or antipsychotics. Many OCD sufferers also tout the benefits of natural remedies like mindfulness meditation, yoga, art therapy, CBD, vitamin supplementation, hypnosis, homeopathy, probiotics, etc. for reducing obsessions and/or compulsions. 

HIV OCD sufferers may also benefit from an HIV/AIDS educational class or program. Knowledge is power so learning the truth about HIV/AIDS (i.e., what it is, how it is contracted, how it is prevented, and how it is treated) could alleviate HIV fears and compulsions. Additionally, talking with people with HIV or AIDS about their condition and putting a face to the disease can help ease stress and anxiety surrounding an HIV-related obsession. OCD support groups, forums, podcasts, and books can be used in conjunction with your prescribed treatment program to help you get a handle on your HIV OCD symptoms.

References

• Imani, B., Zandi, S., Khazaei, S., et al. (2021). The lived experience of HIV-infected patients in the face of a positive diagnosis of the disease: A phenomenological study. AIDS Res Ther 18, 95. Retrieved from https://doi.org/10.1186/s12981-021-00421-4
• Bruce, B. K., & Stevens, V. M. (1992). AIDS-related obsessive-compulsive disorder: A treatment dilemma. Journal of Anxiety Disorders, 6(1), 79–88. Retrieved from https://doi.org/10.1016/0887-6185(92)90028-6 
• Logsdail, S., Lovell, K., Warwick, H., & Marks, I. (1991). Behavioral treatment of AIDS-focused illness phobia. The British Journal of Psychiatry, 159, 422–425. Retrieved from https://doi.org/10.1192/bjp.159.3.422
  Kraus, R. P., & Nicholson, I. R. (1996). AIDS-related obsessive-compulsive disorder: deconditioning based on fluoxetine-induced inhibition of anxiety. Journal of Behavior Therapy and Experimental Psychiatry, 27(1), 51–56. Retrieved from https://doi.org/10.1016/0005-7916(95)00059-3