This interview discusses the complexities of OCD, focusing on Visual Tourettic OCD. It covers its origins, treatment options, and common misconceptions. The goal is to educate people and reduce the stigma around mental health issues. It highlights the importance of empathy and support for those dealing with classic and Visual Tourettic OCD and their families.
Questions
Interviewer: What is classic OCD?
Carol Edwards:
Classic 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 (V-TOCD) 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.
Interviewer: Walk me through a typical example.
Carol Edwards: Imagine people with V-TOCD feeling worried that their moral compass is compromised because they find themselves looking at others’ private areas. It’s completely understandable for anyone to have these concerns, as our moral compass can feel fragile in these situations. However, for people with V-TOCD, these concerns are excessive and distressing. As a result, they may avoid looking at people, such as by 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. While Visual Tourettic OCD shares these origins, it also involves involuntary gazing. A plausible theory is that such gazing is 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 the approaching car, it enables us to react quickly and avoid danger.
In the context of V-TOCD, here’s my growing theory: individuals may experience heightened sensitivity to things in everyday situations, such as when they’re standing at a store checkout. There, they might unknowingly be drawn to the cashier’s chest through a pre-attentive response. This triggers a rapid mental shift, reorienting their focus from unloading their shopping onto the conveyor belt to this unexpected stimulus. Consequently, their awareness intensifies through sensory amplification, resulting in feelings of embarrassment and shame. Overwhelmed by this discomfort, they may feel a strong urge to escape.
Interviewer: Can unconscious memories from past experiences lead to feelings of shame or misunderstanding in present-day scenarios?
Carol Edwards: Yes. 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 may have caught their attention unexpectedly and 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 this now salient stimulus. 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 treat Visual Tourettic OCD, and I’d like to share a few with you.
First, I’d like to discuss habit reversal training (HRT) as a promising treatment for the gazing component in V-TOCD. HRT is used for Tourette’s syndrome, which is characterised by repetitive, involuntary movements or sounds known as motor and vocal tics. These might include blinking, shoulder shrugging, or humming. 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 pressing the shoulder down to manage shoulder shrugging and clenching fists to address nail biting.
Interview: So, how would that work with involuntary gazing?
People with Visual Tourettic OCD often find it difficult to manage their compulsive gazing behaviours. While these actions aren’t classified as habits—like nail biting, which is typically viewed as a habit developed in response to stress, anxiety, or boredom—my theory is that HRT could help. By introducing alternative responses, HRT may effectively disrupt these gazing patterns. These include folding your arms and pushing your hands into your biceps to suppress the gazing behaviour momentarily or gently raising your eyebrows to manage the unwanted gaze. HRT, along with environmental modifications—like sitting at the back of a room in a meeting or class—can help manage involuntary gazing.
Interviewer: HRT sounds promising. But what about exposure and response prevention? Can it help?
Carol Edwards: Yes. This first-line treatment for OCD can be combined with HRT to address related obsessions and compulsions. For example, exposure means repeatedly confronting visual triggers, such as others’ pelvic areas in different situations. This gradually reduces the response to these triggers. Or people may still respond but without the increasing anxiety. The response prevention part means resisting compulsions to prevent their obsessional fears.
Interviewer: Do you have an example of how this combined treatment plan would work in practice?
Carol Edwards: Yes. 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, which becomes obsessive. 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 and notes down situations where she may gaze at someone’s private areas or get distracted, such as in crowded places, at work, or in social situations.
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 she can control 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 (the obsession related to staring). 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 with the cognitive part of therapy.
Interviewer: What is an example of the cognitive part of therapy?
Carol Edwards: For example, Rubi learns to challenge the catastrophic meanings she attaches to the involuntary staring urge (such as “this means I am immoral or perverted”) and to tolerate the resulting uncertainty without performing mental or behavioural rituals. Through repeated exposures, they gather evidence that the feared consequences do not occur, which gradually weakens the obsessional beliefs and reduces the power of the doubt.
6. Progress monitoring: Rubi keeps track of her progress by monitoring how she uses these techniques. She notes the changes in her anxiety related to her obsession and works on enhancing her ability to control her unwanted gaze.
Interviewer: What about medication? Can that help?
Carol Edwards: 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, evidence for the effectiveness of medications in addressing theory-based attention issues related to involuntary gazing is limited.
Interviewer: Do you have any information on brain stimulation methods for treating Visual Tourettic OCD?
Carol Edwards: Deep brain stimulation (DBS) and repetitive transcranial magnetic stimulation (rTMS) are advanced options mainly used for severe OCD that hasn’t responded to standard treatment. DBS places electrodes deep in the brain to calm overactive circuits, while rTMS uses magnetic pulses on the outside of the head and is less invasive. Both can help some people with hard-to-treat OCD, and DBS is sometimes tried for severe Tourette’s. Neither has been specifically tested or approved for Visual Tourettic OCD. However, they might help if the symptoms share the same brain pathways — but that remains unproven and would need specialist assessment.
Interviewer: In your upcoming book “The Power of Support: How Tim Fought Visual Tourettic OCD with Dr Miller’s Help”, you discuss the cognitive model of exposure and the benefits of HRT. You also focus heavily on inference-based cognitive therapy (I-CBT). Why is that?
Carol Edwards: I discovered I-CBT several years ago through the work of Frederick Aardema and Kieron O’Connor. It immediately resonated because, as someone with OCD (now in remission), it explained how my obsessions were driven by doubt rather than reality. In my case, the doubt was “Am I transgender?” triggered by involuntary staring, even though I have always been confident my gender identity matches my biological sex. I-CBT showed me that I was leaving the real world and entering an imaginary one to try to resolve a doubt that wasn’t based in reality, and that doing compulsions only strengthened that doubt. It showed me that I was inferentially confused. That’s why the first part of my upcoming book focuses so heavily on I-CBT through the dialogues between Tim and Dr Miller.
Interviewer: Can you briefly describe someone being inferentially confused, and can you expand on how I-CBT can help?
Carol Edwards: It means treating an imagined or remote possibility as if it were a real and relevant fact, while distrusting clear sensory evidence and common sense. Someone learns not to be inferentially confused by repeatedly practising a return to direct, present-moment sensory information and realistic reasoning, thereby recognising that obsessional doubts arise from imagination rather than reality.
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 individuals speak up for themselves and make it easier for others to understand their condition. It encourages people to be more compassionate and less judgemental.
Interviewer: What’s the prognosis for V-TOCD?
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.
Through the Eyes of OCD: Understanding Tourettic Tics and Involuntary Gazing