HIV-related fear

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Page last reviewed 5.4.2024

There is an effective medication for HIV which keeps people living with HIV healthy and well. The life expectancy of people living with HIV in Finland is the same as those who do not have HIV. HIV is not transmitted through sex from an HIV-positive person who is on effective medication. Over the years, we have noticed at Hivpoint’s counselling services that some who contact our services have a strong HIV-related fear that does not go away with receiving up-to-date information about HIV, and that by getting the information from a professional that there has been no risk of HIV. Sometimes the fear is so strong that the person repeatedly returns to our counselling services and, for example, does not believe that they don’t have HIV transmission, even if the test result clearly shows it.

Why does HIV cause fear?

The fear associated with HIV may come from the fact that HIV was a life-threatening and scary illness in the early 1980s. At that time, HIV/AIDS was also dramatically in the news, and those news may still live strongly in people’s minds. There was also lack of knowledge of the ways of transmission. HIV-related news coverage is often still sensational, and there are many false beliefs concerning HIV, which tends to reinforce fears. Hivpoint actively strives to increase correct, up-to-date information about HIV and thus reduce fear related to HIV.  

Hivpoint also wants to support those suffering from fear of HIV by referring them to the right kind of services.

The fear of HIV may be caused by a distressing event or stressful life situation

In our experience, intense fear of HIV can be triggered by feelings of shame, a distressing event, or a stressful life situation. There are a lot of norms related to sexuality in our society that influence what is seen as normal sexual behavior. Deviating from the norm may cause shame and anxiety in some people, which can also manifest as a strong fear of HIV.  

According to our own observations, the following situations may trigger fear of HIV: the purchase of sexual and erotic services, first experiences of sex between men, or casual sexual relations. For many, the most distressing thing about HIV is the possibility of transmitting it to another person, and sex outside the relationship (without being agreed between partners) is one of the typical situations behind the fear of HIV. Becoming a victim of sexual violence can trigger a strong fear of HIV.

Getting help and support is first and foremost important when you have experienced sexual violence, and it is important to take into account HIV-related issues such as HIV post-prophylaxis medication (PEP), HIV testing and dealing with the fear of HIV. Seri Support Centers are support units for everyone over the age of 16 who has experienced sexual violence, regardless of gender. Here you will find information about Seri Support Centers and contact information for all Seri units in Finland. 

In some cases the strong fear of HIV may be caused by obsessive-compulsive disorder (OCD)

Recurrent and life-disrupting fear of HIV can be caused by obsessive-compulsive disorder (OCD). Obsessive-compulsive disorder (OCD) is a mental disorder in which people have unwanted and repeated thoughts, feelings, ideas, sensations (obsessions), and behaviors that drive them to do something over and over (compulsions). Often the person carries out the behaviors to get rid of the obsessive thoughts. But this only provides short-term relief. Not doing the obsessive rituals can cause great anxiety and distress.

Mild and occasional compulsions are very common, about 2-3 % of people suffer from obsessive-compulsive disorder at some point in their lives. Help and support are available. The disorder often develops slowly, and thoughts and actions are mild at first and may not interfere with everyday life. Obsessive thoughts are thoughts that invade the mind and feel disturbing, and unpleasant. Obsessive thoughts often include fears around dirt, germs, or illness. Typical compulsive action can be, for example, constant checking and verification, or a strong need for repeated sedative assurances. 

Healthcare professionals may have difficulty recognizing obsessive thoughts or actions, as healthcare encounters are often short-term and one-off. If the client raises questions about HIV, the focus is often on solving these questions, for example by referring them to an HIV test. However, this does not eliminate obsessive thoughts or actions, but can reinforce them. Visiting a health care setting, it would be important to let the professional know of any disturbing thoughts about HIV.  

HIV fear can also be caused by generalised anxiety disorder, where a typical symptoms is constant worrying. According to Mieli ry, anxiety often manifests itself as an unreasonable and constant concern for health, for example. 

Typical disturbing thoughts related to HIV  

  • Excessive and repeated fear of being infected with HIV in some everyday situation, for example from a public toilet, public transport or while going to a store.  
  • Excessive and repeated fear of being infected with HIV in everyday interaction with another person.  
  • Excessive and repeated fear of being infected with HIV from a needle on the ground or in a garbage bin. Just seeing a used needle can trigger the fear.  
  • Various intense and recurring fears related to sexual situations: fear that the condom will break, fear of contracting HIV even in sexual practices that do not carry an HIV risk (e.g. kissing, caressing a partner) and difficulty trusting that a partner has been tested for HIV. 
  • Excessive and repeated fear of exposing a loved one, typically a child or spouse, to HIV infection. For some people, pregnancy triggers their fear of HIV.  
  • An excessive and repeated fear of being infected with HIV under the influence of intoxicants and having no memory of the situation. Intense and repeated fear of being infected with HIV during a health care procedure, either as a client or as a professional.  

HIV-related compulsions may include 

  • Excessive cleaning and washing rituals. 
  • Excessive washing of clothes and cleaning of household surfaces.  
  • Compulsive information gathering about HIV infection, especially about different ways of HIV transmission. It is also typical to seek information on how HIV infection shows up in the test.  
  • Compulsively seeking confirmation from close ones or health care professionals. In the case of obsessive-compulsive disorder, getting an answer or confirmation eases only for a moment, after which the disturbing thoughts return. 
  • Compulsive HIV testing and difficulty relying on a negative test result.  

Obsessive-compulsive disorder (OCD) can be treated  

Obsessive-compulsive disorder (OCD) impairs quality of life in many ways. The intensification of symptoms can be affected by, for example, a stressful or changed life situation, such as pregnancy, becoming a parent or divorce. Fears can also be reactivated in different life situations.

OCD can be treated with medication, psychotherapy and exercises that support symptom management. Online therapy or self-help programs can also help. If you recognize symptoms suitable for obsessive-compulsive disorder and they interfere with everyday life, you should see a general practitioner, psychiatrist or psychologist as soon as possible.

It is important to remember that disturbing thoughts are not something to be ashamed of and are common. Seeking help is worthwhile. 

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