Interviewer: Meet Carol Edwards, an Advocate for Understanding and Compassion in OCD
In a world where mental health stigmas exist, advocates like Carol Edwards are important for raising awareness and understanding. Carol is a former CBT therapist who specialises in obsessive-compulsive disorder (OCD). Now, she is a full-time carer and shares information about OCD through her writing.
She has authored books on OCD and visual Tourettic OCD, available on Amazon. She maintains a website, http://www.ocdwriter.com, featuring blogs and videos. Her articles have appeared on thriveglobal.com, and she seeks more platforms to share her experiences.
In this interview, Carol discusses the complexities of OCD, focusing on visual Tourettic OCD. She discusses its origins, treatment options, and common misconceptions about it. Her goal is to educate people and reduce the stigma around mental health issues. She highlights the importance of empathy and support for those dealing with classic and visual Tourettic OCD and their families.
Questions
Interviewer: What is OCD?
Carol Edwards: OCD, or obsessive-compulsive disorder, is a mental health condition characterised by obsessions and compulsions. Obsessions can revolve around fears, such as concerns about germs and other contagious diseases. As a result of these distressing thoughts, individuals often feel anxious. To alleviate their anxiety, they feel compelled to perform compulsions, such as washing their hands many times to get rid of germs. If they fail to carry out these actions, their anxiety tends to increase.
Interviewer: What is visual Tourettic OCD? How does it work?
Carol Edwards: Visual Tourettic OCD has features like traditional OCD. However, it also involves an unintended focus on people’s sensitive areas, body features, objects, and environmental distractions. Like traditional OCD, it includes obsessions and compulsions. For example, imagine people with visual Tourettic OCD feeling worried that their sense of right and wrong is compromised because they find themselves looking at others’ private areas. It’s completely understandable to have these concerns, as our moral compass can feel fragile when faced with such situations. However, for people with visual Tourettic OCD, these concerns are excessive and distressing. Subsequently, they may try to avoid looking at people, such as covering their eyes or turning their heads.
Interviewer: What causes visual Tourettic OCD?
OCD develops due to a combination of biological factors, such as chemical imbalances in the brain, genetics, and environmental influences like stress and trauma. Neurological factors contribute to OCD, particularly issues with the prefrontal cortex, which is responsible for decision-making and impulse control. Psychological factors that affect thoughts and emotions also contribute to OCD. While visual Tourettic OCD shares these origins, it also involves involuntary gazing, possibly linked to heightened exogenous attention from external sources.
Interviewer: Can you expand on exogenous attention in visual Tourettic OCD?
Carol Edwards: Exogenous attention is a fundamental aspect of how we perceive and respond to things in our environment. It involves three key components: pre-attention, reorienting, and sensory amplification.
1. Pre-attention is an unconscious process that monitors our surroundings for important things, such as a nearby car.
2. Reorienting is an automatic shift in focus that occurs when a significant thing, such as the approaching vehicle, captures our attention.
3. Sensory amplification enhances our perception of the attention-grabbing crisis, helping us respond effectively. In the case of a car approaching us, it enables us to react quickly and avoid danger.
In the context of visual Tourettic OCD, individuals may experience heightened sensitivity to things in everyday situations, such as when they’re standing at a store checkout. While shopping, they might unknowingly fixate on the cashier’s chest due to a pre-attentive response. This leads to a rapid mental shift, where their focus reorients from the shopping task to this unexpected stimulus. Consequently, their perception of this awareness intensifies due to sensory amplification, resulting in feelings of embarrassment and shame. Overwhelmed by this discomfort, they may feel a strong urge to escape the situation.
Interviewer: Can unconscious memories from past experiences lead to feelings of shame or misunderstanding in present-day scenarios?
Carol Edwards: Yes, situations like this may come from unconscious memories. For example, the person who finds themselves looking at a cashier’s chest might have noticed another cashier’s chest the week before. This earlier encounter caught their attention unexpectedly and may have left them feeling misunderstood and ashamed. Later, when they face a similar situation in the supermarket, their brain reacts, causing them to focus suddenly on what they see. This response can also extend to other situations, as their brain is primed to recognise these cues.
Interviewer: What’s the treatment?
Carol Edwards: There are several effective ways to help treat visual Tourettic OCD, and I’d like to share a few of them with you. I won’t cover all of them, but I hope the ones I do share will be helpful.
First, I’d like to discuss habit reversal training (HRT) as a promising treatment for the gazing component in visual Tourettic OCD. It is used for Tourette’s syndrome, which is characterised by repetitive, involuntary movements or sounds known as motor and vocal tics. These might be things like blinking, shoulder shrugging or grunting. It is also used to treat habit-forming behaviours like nail biting. The idea is to introduce competing responses that dominate the unwanted behaviour, such as tensing muscles to manage shoulder shrugging and clenching fists to address nail biting.
Individuals with visual Tourettic OCD often struggle to control their repetitive gazing behaviours. Although these behaviours are not technically habits (such as nail biting, which is commonly considered a habit that individuals develop as a response to stress, anxiety, or boredom), HRT can help by introducing competing responses to disrupt these gazing behaviours. These include folding your arms and pushing your hands into your biceps or raising your eyebrows to handle the unwanted gaze. HRT, along with environmental modifications—like sitting at the back of a room in a meeting or class—can aid in managing involuntary gazing.
Another effective therapy is exposure and response prevention (ERP). This first-line treatment for OCD can be combined with HRT to address related obsessions and compulsions. For example, exposure means repeatedly confronting obsessional fears, and response prevention means resisting compulsions that otherwise feed the obsession.
Let me give you an example of how this combined treatment plan would work in practice:
Imagine a person named Rubi who struggles with gazing at people’s sensitive areas and also external distractions. She fears that her staring reflects immoral behaviour. To address this obsession, she uses HRT and ERP in her daily life. Let’s look at how she does this in 6 simple steps:
1. Identify triggers: Rubi recognises situations where she may gaze at someone’s private areas or get distracted, such as in crowded places or when she is anxious.
2. Competing responses: When the unwanted staring urge arises, Rubi clenches her fists and simultaneously directs her gaze to an object, such as a shop sign. Her nails digging into her palms overpower the urge to stare, and directing her gaze elsewhere shows that she can simultaneously exercise control over her eye movements.
3. Gradual exposure: Rubi exposes herself to triggering situations, using her competing responses instead of avoiding the triggers.
4. Response prevention: When anxiety strikes in a triggering situation, Rubi refrains from seeking reassurance about immoral behaviour. She also resists avoidance compulsions, allowing her anxiety to decrease naturally.
5. Repetition: Rubi practices her techniques in various triggering situations to manage unwanted gazing while reducing her fear of immorality.
6. Progress monitoring: Rubi monitors her successful use of these techniques and observes changes in her anxiety regarding immoral behaviour while improving her skill to control her unwanted gaze.
Let’s now discuss medication, another treatment option for someone like Rubi. Prescriptions like fluoxetine (Prozac) and sertraline (Zoloft), often prescribed to treat depression, can also help lessen the severity of OCD symptoms on a passive level. These work well with active treatments, like ERP and HRT. However, there is limited evidence to support the effectiveness of medications for addressing possible attention issues related to involuntary gazing. For more information on medications associated with attention deficits, motor movements in Tourette’s, and involuntary gazing in OCD, you can refer to my book, “Through the Eyes of OCD: Understanding Tourettic Tics and Involuntary Gazing.”
Brain stimulation methods are additional treatment options, such as deep brain stimulation and non-invasive brain stimulation. These inventive treatments target key brain regions involved in regulating movement and behaviour. In my book, “Through the Eyes of OCD,” I discuss the advantages and disadvantages of these treatments.
Finally, let’s look at inference-based cognitive therapy (I-CBT). I-CBT is a validated therapeutic approach specifically designed to tackle inferential confusion experienced by individuals with OCD. Inferential confusion refers to the misunderstanding or misinterpretation of information that results in inaccurate conclusions.
Consider George, who struggles with visual Tourettic OCD and fears that he is being rude or that others perceive him as rude for staring at them—a comment he heard in his youth. Through I-CBT, he learns to challenge this assumption, helping him differentiate between his fears and reality. This process allows George to recognise alternative perspectives on his inference-based interpretations. To clarify, when he feels the urge to gaze at someone, he learns to ask himself whether there is any evidence that others are judging him and to explore other explanations for his feelings.
For example, observing someone who wraps themselves up might give George the impression that they are upset with him for looking at them in an inappropriate way. He then reevaluates this interpretation, realising they might be cold or just that they had forgotten to button their blouse or zip their pants. This process helps him focus on his true intentions of respecting others rather than being consumed by his fear of being rude.
In this sense, George learns to rely on sensory experiences. He learns to trust the information gathered through his senses and use his common sense to interpret and understand situations he encounters. For instance, suppose George is walking through a shopping precinct and relies on his sense of sight to interpret people’s thoughts and behaviours. In that case, he is likely to reach a rational conclusion more efficiently and accurately than if he were solely relying on inference-based reasoning or guesswork. In this way, relying on sensory experiences and common sense helps George make informed choices and navigate his way through various situations more effectively.
As George practices these techniques over time, he becomes less confused by inferences, gains confidence in social situations, and reduces his compulsive behaviours, realising that they do not solve his problems.
Further information about I-CBT is available at www.icbt.online
Interviewer: If someone is seen staring and receives a negative response, what can they do to address the situation?
Carol Edwards: A good coping strategy is to carry a pocket-sized card with links to helpful resources. This can help you speak up for yourself and make it easier for others to understand your condition. It encourages people to be more compassionate and less judgemental.
Interviewer: What’s the prognosis?
Carol Edwards: The prognosis for OCD differs among individuals. It is influenced by symptom severity, co-occurring mental health conditions, and treatment access. Usually, OCD symptoms fluctuate, and even with full effort and the best treatments for some, a small percentage of symptoms remain. Therefore, while OCD is a chronic condition that may not completely subside, remission or effective management is possible through therapy, medication, and self-care, including for those with the involuntary gaze component.
Interviewer: Who gets visual Tourettic OCD?
Carol Edwards: People who are prone to developing OCD can get the visual Tourettic subtype. Some might develop this one theme, while others may acquire more than one, usually those that are significant to them. These might include contamination obsessions, especially if individuals worry about illness through contact with germs or feel dirty, which is more of a physical problem than a concern about germs and disease. Some individuals feel excessively responsible for others, in which case, they may also worry about potential harm and frequently check things to ensure safety. These are just a few examples, and there are many more.
Some individuals with visual Tourettic OCD may have co-existing conditions like ADHD or attention deficits. Attention deficits can increase awareness of stimuli, such as body parts and bodily features, including tattoos and scars, leading to hypersensitivity to people, noise, and movement. It involves a significant amount of sensory processing, but it can be managed with proper treatment.
Interviewer: Can you expand on sensory processing and its potential role in visual Tourettic OCD?
Carol Edwards: How our brains process sensory information may determine its role in visual Tourettic OCD. For example, imagine someone with this condition sitting in a busy coffee shop. While trying to focus on their conversation with a friend, they are constantly drawn to the movement of people walking by and the sounds of the barista making drinks. Despite their best efforts, their brain struggles to filter out this sensory input and fixates instead on the sensitive areas of those around them or other body features, such as scars and tattoos. This heightened sensitivity to such stimuli and peripheral distractions leads to involuntary staring behaviour, distress, and interference with their ability to engage in social interactions. In this scenario, you can see the difficulties in sensory processing and how it plays a potential role in visual Tourettic OCD symptoms.
Interviewer: How can people with visual Tourettic OCD overcome sensory processing difficulties?
Carol Edwards: Individuals with sensory processing difficulties can manage them by including a sensory diet in their daily routine. An occupational therapist typically creates this plan, which includes specific activities, tools, and exercises designed to improve sensory processing.
Examples of a sensory diet include:
– Sensory Activities: This might be mindful walks in nature to engage with sights, sounds, and smells, improving sensory processing and reducing hypersensitivity.
– Sensory Exercises: Sensory exercises, such as push-ups, provide calming pressure input that helps regulate the nervous system, thereby enhancing focus and attention. They also relieve tension and excess energy, promoting relaxation and alertness to what matters.
– Sensory Tools: Fidget toys, like stress balls or textured rings, help release excess energy and improve concentration during tasks.
I discuss the sensory diet in more detail in my book, “Through the Eyes of OCD”.
Interviewer: What social problems and human rights violations do individuals with visual Tourettic OCD face?
Carol Edwards: Individuals dealing with visual Tourettic OCD often endure a range of traumatic experiences, including bullying, ridicule, and social ostracism. Many have been subjected to verbal abuse, received threats, or even experienced physical attacks due to their condition. In professional settings, the stigma surrounding visual Tourettic OCD can lead to unjust job rejections or discrimination, where individuals may find themselves unemployed or overlooked for promotions or opportunities solely based on misconceptions about their involuntary and unwanted behaviours.
Moreover, this discrimination can extend beyond the workplace, affecting access to essential services and public places. Such negative treatment is particularly prevalent in conservative environments, where certain behaviours—like a lingering gaze or sporadic staring—can lead to misguided assumptions about the person’s character, including unfounded labels like “paedophile” or “pervert.” As a result, people with visual Tourettic OCD can feel alienated and marginalised, impacting their mental health and overall quality of life.
Interviewer: What is a staring tic, and how is it different from an intentional stare?
Carol Edwards: Earlier, I discussed exogenous attention, which includes pre-attention, reorienting, and sensory amplification. This behaviour is an involuntary reaction that occurs in a split second and appears similar to a true motor tic found in Tourette’s syndrome. However, according to my theory, people with visual and peripheral OCD may struggle with heightened exogenous attention, explaining that the staring-like tic is unintentional when something grabs their eye. Based on this theory, intentional staring differs because it occurs when someone looks at a specific person or their body parts on purpose. It has a deliberate goal and is done with full awareness.
Interviewer: What are intrusive thoughts, and how do they differ from fantasies and intentional thoughts?
Carol Edwards: Let me explain two important differences between intrusive thoughts and inferences and then clarify how they differ from fantasies and intentional thoughts.
First, intrusive thoughts arise from the subconscious and are experienced by everyone. However, for individuals with OCD, these thoughts can lead to significant anxiety or distress. According to cognitive-based ERP therapy, people with OCD tend to assign meaning to their intrusive thoughts. For example, someone with involuntary gazing OCD might have an intrusive thought suggesting they are immoral, immediately connecting it to their staring behaviour. Consequently, the fear of being immoral leads them to avoid certain situations, covering their eyes during interactions or turning their head to one side to prevent staring.
Second, inference-based cognitive therapy (I-CBT) powerfully addresses the issue of intrusive thoughts as internal inferences that initiate and fuel obsessive doubt in individuals with OCD. Consider this: when someone is plagued by an internal assumption about immorality, they might come to wrongfully believe they are sinful simply because they happen to glance at another person’s body. This overwhelming doubt is a clear sign of deeper obsessive thinking and a fragile sense of their own moral integrity. In a desperate attempt to understand the problem, they create elaborate narratives based on assumptions and inferred reasoning. However, this approach often backfires, intensifying their doubts instead of resolving them. I-CBT helps people move away from these imaginative narratives and rebuild their trust in their own sense of right and wrong.
Next, fantasy and intentional thoughts are very different from intrusive thoughts or internal inferences because people have control over them. Fantasy thoughts involve imagining different scenarios or planning activities. They often give a positive escape from reality and a sense of creative control. In contrast, an intentional thought is a conscious, deliberate mental process directed towards achieving a specific goal or outcome, such as consciously deciding to wake up early to go for a morning run.
Interviewer: Are compulsions a deliberate mental process aimed at achieving a specific outcome, such as consciously deciding to engage in repetitive behaviour?
Carol Edwards: Interestingly, while compulsions may be deliberate and conscious in the sense that the individual is aware of performing them, they are not typically considered intentional thoughts directed towards achieving a specific goal or outcome rationally. Instead, they are driven by the need to reduce anxiety or ward off perceived danger, which can reinforce the cycle of obsessions and compulsions in OCD.
Interviewer: Do people with visual Tourettic OCD enjoy staring? Do they feel a strong urge to stare at others, similar to an addiction or a habit?
Carol Edwards: It’s important to understand that the motivations behind addiction and involuntary gazing are fundamentally different. Addiction seeks and craves intentional pleasure. In contrast, involuntary gazing is an automatic and troubling response to unwanted stimuli, such as sensitive body areas, etc.
Interviewer: Are individuals with OCD-related gazing perverts?
Carol Edwards: No, quite the opposite. It’s essential to clarify that OCD is a mental health condition characterised by repetitive thoughts and behaviours, not deviant sexual behaviour. Involuntary staring associated with OCD is not a choice or desire for inappropriate conduct; it stems from a neurological condition and does not reflect true intentions.
Therefore, a significant thing is to realise the distinction between perverts and individuals struggling with visual Tourettic OCD. This distinction lies in the underlying psychological mechanisms driving their behaviours. Perverts may show a pattern of predatory or unscrupulous exploitation rooted in their distorted views of sexuality. In contrast, individuals with visual Tourettic OCD struggle with an uncontrollable force to stare, triggering obsessive fears of being wrongly labelled and then doing compulsions, such as avoidance, escape or seeking reassurance to ensure safety.
Interviewer: Is there a risk that they might commit sexual crimes such as harassment or other sexual crimes?
Carol Edwards: No. People with visual Tourettic OCD are not the same as sexual criminals and, therefore, are not at risk of committing sexual crimes or harassment. While individuals with visual Tourettic OCD may have difficulties controlling their involuntary staring at people’s sensitive areas, it’s important to reinforce that this behaviour is not motivated by sexual desire or intent.
Comparing individuals with visual Tourettic OCD to sexual criminals spreads harmful stereotypes and misunderstandings about the condition. It’s important to understand the differences in behaviour and motives to avoid stigmatising and discriminating against those with visual Tourettic OCD and mental health.
Interviewer: Are such individuals a risk to public safety in general?
Carol Edwards: No, there is no risk in that way. People with visual Tourettic OCD might offend someone due to gazing because the receiver of the gaze doesn’t understand why the gazing happened, but this doesn’t indicate a risk to public safety.
Interviewer: Do these people lack moral fibre?
Carol Edwards: No. OCD is a mental health issue that does not reflect a person’s values or moral beliefs. They can make ethical decisions just like anyone else. It’s important to understand that mental health conditions do not determine a person’s worth or sense of right and wrong.
Interviewer: Does this issue come from not being religious enough?
Carol Edwards: No, that idea is too general. It suggests that someone with visual Tourettic OCD isn’t spiritual enough and needs to try harder. This is like saying a person with contamination OCD, who cleans often, should clean even more. People with visual Tourettic OCD come from all backgrounds, including those who are very religious.
When someone with visual Tourettic OCD attaches meaning to their symptoms or thinks in a flawed way, it keeps the cycle of OCD going. Many individuals with OCD worry that they are not religious or responsible enough, but this does not reflect who they really are. In fact, their commitment to their faith and their reliability can increase these worries. OCD is a paradoxical disorder; it leads people to doubt the very qualities they value.
Interviewer: Is visual Tourettic OCD a mental illness brought on by exposure to Western culture and values? Is a lack of traditional family values likely to cause this illness?
Carol Edwards: These things may have an impact on OCD symptoms, but OCD is not just caused by Western culture or a lack of traditional family values. Instead, as we’ve seen, OCD develops from a mix of genetic, biological and environmental factors. Additionally, neurological processes play a role in shaping behaviour. At the same time, psychological factors related to thoughts and emotions contribute to one’s actions. These factors can interact and influence one another, eventually leading to the development and worsening of OCD symptoms. Moreover, as already mentioned, while we all respond to noticeable things due to exogenous attention, this may be exaggerated in people with involuntary gazing in visual Tourettic OCD.
Interviewer: Are these people disabled?
Carol Edwards: People with OCD are not always considered disabled like those with physical disabilities, which limit movement or body function, or intellectual disabilities that affect thinking and learning abilities. However, OCD can significantly impact daily life, including work, relationships, and overall well-being. Individuals with severe OCD may be eligible for disability benefits if their symptoms make it hard to accomplish daily tasks. In the end, whether someone is classified as disabled depends on how severe their symptoms are and how much these symptoms interfere with their daily activities.
Interviewer: Is there a functional assessment for OCD and visual Tourettic OCD?
Carol Edwards: Most clinicians use a checklist called the Yale-Brown Obsessive-Compulsive Scale II (Y-BOCS II) for OCD. This rating scale is designed to assess the severity and types of symptoms associated with OCD. Since visual Tourettic OCD is a variation of OCD, this checklist focuses on the thoughts and behaviours linked to staring. Several clinicians also consider looking at attention issues because they can sometimes overlap with OCD symptoms. For example, as noted already, problems with attention might lead to staring behaviours in people with visual Tourettic OCD. These attention issues may come from being more sensitive to certain things in their environment. Understanding this can help in creating proper assessment and effective treatment strategies.
Interviewer: If someone is staring at a person of the same gender, does it mean they are homosexual?
Carol Edwards: No, staring at someone of the same gender is an involuntary response. Even if a person identifies as homosexual, it does not necessarily mean that their staring is related to their sexuality. To clarify, if someone unintentionally looks at an animal’s private parts, would it imply that they are interested in bestiality? Or if someone accidentally stares at children, does that mean they are a paedophile? In both cases, these stares are unwanted behaviours. They can be distressing for the individual who cannot control their gaze.
Interviewer: Are these shy, timid and cowardly people who tend to be afraid of everything?
Carol Edwards: People with OCD are just like anyone else, and some, like others, may be shy, timid, or even cowardly. However, individuals with visual Tourettic OCD face specific challenges due to certain triggers. These triggers can include unintentional responses to other people’s body parts and distractions in their surroundings. Although these triggers might cause fear about repeating their gazing behaviour, it does not indicate that they are inherently shy, timid, or cowardly unless these traits are separate from the disorder itself. In fact, many individuals with OCD demonstrate remarkable strength and resilience as they navigate their daily struggles, regardless of their personal characteristics.
Interviewer: What does it mean if someone is staring at me like that? Are they attracted to me? Are they having a bad thought?
Carol Edwards: In the context of visual Tourettic OCD, the answer is no. When individuals with OCD stare at your private areas, it means they are caught in a distressing and uncomfortable experience. They may feel a strong urge to look away but find themselves unable to do so. Or they may glance sporadically, showing their eyes are rapidly scanning your private regions without control. Therefore, it is automatic and linked to OCD rather than attraction. People with involuntary gazing OCD often have negative thoughts about themselves. At the same time, they worry about upsetting the person they are looking at. It’s important to be compassionate and understanding. Their behaviour reflects their illness, which causes them distress.
Interviewer: What actions should people with visual Tourettic OCD be held responsible for, and what should they not be held responsible for?
Carol Edwards: For people with visual Tourettic OCD, being actively responsible for getting treatment and therapy to help manage their symptoms is a positive should. Positive “shoulds” enable individuals to make choices that align with their values and goals. It promotes independence, empowerment, and personal growth, making individuals feel more in control of their decisions. They may also be responsible for talking about their condition with others to help them understand, even though this can be very difficult. The pocket-sized card mentioned earlier can help empower self-advocacy and raise awareness.
However, a negative should usually involves someone forcing their beliefs or expectations onto another person, often without considering what that person values or wants. In the example of someone with visual Tourettic OCD, they are not responsible or to blame for their OCD symptoms and involuntary gazing, as these are part of their mental health condition. Therefore, these individuals deserve compassion and understanding, as the disorder is not their fault.
Interviewer: Some might argue that even if a person with visual Tourettic OCD cannot control their eyes, why should others have to endure their stares? Many believe they have the right to go about their day without being stared at inappropriately. How should society approach this issue?
Carol Edwards: Society can approach this issue by understanding and empathising with people who have visual Tourettic OCD. Repetitive eye movements or prolonged staring might make others uncomfortable, but it’s important to realise that those with visual Tourettic OCD do not wish to disturb anyone; they often feel uneasy themselves. Instead of judging or excluding these individuals, we can educate ourselves about this condition and other mental health disorders. It can help us identify certain behaviours; for example, seeing someone staring and noticing they are in distress can help us be less judgemental. It helps us see beyond their staring. This can help us create a more inclusive environment. When we raise awareness and acceptance, we build a supportive community for those with visual Tourettic OCD and other mental health conditions.
Final words: I want to extend my gratitude to my interviewer, who prefers to remain anonymous, and to the readers who engaged with this interview. It’s encouraging to witness so many individuals collaborating to combat stigma, enhance access to care, and elevate awareness of mental health issues. By uniting our efforts, we can foster an environment where mental illness is approached with the same compassion and care afforded to physical and intellectual disabilities. Together, we can make a meaningful difference in creating a more supportive world for everyone.
Through the Eyes of OCD: Understanding Tourettic Tics and Involuntary Gazing