We have all likely heard the term OCD be used in everyday talk as a way to describe someone who likes things to be neat and organized, or as a personality trait for someone who likes to have control and order. But if you live with OCD (obsessive-compulsive disorder), or love someone who does, you are likely acutely aware of the immense suffering that can accompany this condition and the challenges of finding the right therapist and treatment approach.

I distinctly remember the first ever depiction of OCD I saw on TV: Jack Nicholson in the 1997 film As Good As It Gets. For some reason, this is one of the few movies we owned on VHS in our house at the time. I think it came in one of those box sets we used to get in the mail, IYKYK. In this movie, you see some of the classic stereotypical depictions of OCD behaviour; avoiding stepping on cracks in the sidewalk, counting as he locks and unlocks the door and switches the lights on and off, and washing his hands vigorously in steaming hot water. They also made him an extremely unlikeable character; rigid, crass and bigoted. Thanks to Hollywood and its stereotypical and often stigmatizing portrayals of mental health - that’s another blog post though! I just remember little me watching this and thinking that I would never want to be like him or live like that. The messaging that mental illness was something to be ashamed of, especially when it made you look and act so different, was received early.

The lived experience of OCD is of course more complex and layered than most media portrayals can offer. Cleanliness or fear of germs (categorized as contamination OCD) is just one of the many different themes or realms of life in which it can manifest (often referred to as sub-types). Other common sub-types include harm OCD, ‘just right’ or perfectionism OCD, relationship OCD, religious or scrupulosity OCD, sexuality and gender OCD, to name just a few (Surles, 2023). NOCD is an excellent source of information if you are interested in learning more about OCD, they have an entire library of clinically reviewed material. This is the definition they provide:

“Obsessive-compulsive disorder (OCD) is a serious, highly debilitating condition that involves disturbing mental content referred to as obsessions, which includes thoughts, images, urges, and ideas that are recurrent and evoke significant distress for the individual experiencing them. Most people with OCD respond to their obsessions and accompanying distress by engaging in compulsions, which are behaviors or mental actions aimed at reducing the resulting distress and neutralizing a perceived threat.”

It is estimated that 3% of the global population lives with OCD, and that receiving an accurate diagnosis and effective treatment can take 14 to 17 years on average for adults (Migala, 2024).

My first encounter with OCD

I was 13 when OCD made its first significant appearance in my life. I suddenly developed an all-consuming fear of contracting HIV after learning about how it could be transmitted through blood. Soon the intrusive thoughts were relentless; the possibility of getting HIV from public places, how it would destroy my life, isolate me, and make me a risk to my own family and people that I loved. It is not surprising that my fear developed around an already stigmatized issue like HIV. I only learned much later how common this fear is amongst the early experiences of those who live with contamination-based OCD. The intrusive thoughts plagued me so much that I started washing my hands frequently and for long periods of time, to the point that my hands were so cracked and dry they would bleed and it was painful to even bend my fingers. The fear was crippling and I started to avoid leaving the house at all, pretending to be sick so I would not have to go to school.

When I look back now, I can see how truly and utterly terrified my parents were to see me suffer like that. The cards were stacked against us, given the lack of awareness and mental health stigma that existed in immigrant communities, especially at that time. They had no idea what was happening to me and just wanted to make it stop. Unfortunately, that meant using discipline, fear, and punishment to get me to stop engaging in the rituals. They reached out to the principal hoping to find guidance, but given the general lack of awareness of mental health even amongst educators at the time, their solution was also to stop the handwashing and to separate me from the friends they thought had something to do with the initial fear developing. Not only did I feel like I was in trouble for something I had no control over and absolutely hated doing, I also became more isolated and felt such extreme embarrassment and shame. Not surprisingly, this only served to eventually repress the OCD for some time. On the surface it went away and I kept living my life for many years, with minor OCD-like tendencies coming up here and there. Whenever anyone would bring up that episode I would shudder, refuse to acknowledge it, and insist that it would never happen again and it was not who I was. Spoiler alert – it reemerges later in my adult life with full force and this time I could not just scare or wish it away.

What role does shame play in the OCD cycle?

Shame can be such a potent force for individuals who live with OCD. “Shame is an intense feeling of humiliation or worthlessness,” the feeling that something is inherently wrong with you, which can lead to a deeply negative perception of self (Cuncic, 2022). When experienced over and over again, shame can become chronic and toxic, interfering with one’s ability to function and thrive. Shame can show up in many different forms in the experience of OCD; it could be relation to the types of fears and intrusive thoughts one suffers from (these can often have to do with “taboo topics” such as religion, sexuality, or harm), from the fear of judgement if someone sees them engaging in compulsions which can sometimes look odd from the outside (which leads to the pressure to do rituals in secret) and from feeling like a burden to their loved ones because of how it impacts their lives as well – to name just a few. The reason I want to talk about shame here is that it has become apparent to me, through my own journey with OCD and the focus of my clinical work, that there is a unique intersection of the experience of shame for those who live with OCD and also identify as being children of immigrants/ as coming from diasporic communities. This presents important considerations for how to support this population in therapy.

This excerpt from a piece on struggling with “chronic guilt as the daughter of immigrant parents” sums up so poignantly some of the different factors that come together to create this complex experience of shame for those of us who share this identity:

“The expectation to excel academically, professionally, and socially while honoring cultural traditions and familial obligations can feel overwhelming. The impact of these struggles can be reflected in many different ways of life by harsh self-criticism, denying ourselves the ability to express any form of negative emotions, such as ‘I don’t like doing X…. I am struggling with Y’ (and NEVER directly to our parents) when relentlessly pursuing meeting both personal and familial expectations” (Soukhanouvong, 2024).

The author uses the term “chronic guilt” in this piece, to refer to this persistent and enduring feeling of guilt, that you are always doing something wrong. In many ways I see this as being synonymous with shame. While guilt is experienced as the feeling that we did something wrong, relating to a particular action – shame can be understood as its pervasive form that leads us to believe that we are inherently somehow wrong or flawed, and by extension, unworthy, inadequate, unwanted. It is a deeply painful, isolating and often debilitating emotional experience.

In addition to the pressures of being a child of immigrants, there is also the impact of colonization on mental health perceptions in our communities that has led to mental health challenges being seen as an individual weakness or failure, and thus as something that is to be ashamed of, suppressed and hidden. This stigma around mental illness is certainly not exclusive to non-Western communities, however the way it interacts with the other realities of immigrant life make it a unique experience that needs to be validated and addressed as apart of any therapeutic intervention. For so many of our parents and elders, survival was the ultimate goal when coming to a new country and trying to establish a life and future for their family. This translated into an often unspoken but widely held belief that showing weakness or failure was not an option because it would be antithetical to survival; we are hardworking, we are resilient, we succeed at all costs. The next generation has grown up internalizing this message and it has had serious implications for how we relate to ourselves when we struggle.

We are often also reminded of the sacrifices that our parents made for us, leaving home in search of a better future, working grueling hours at thankless jobs to make ends meet, the list goes on. Our success becomes our way of repaying this debt, so when we are unable to live up to these otherwise unrealistic and unfair standards of existence, there is often an experience of shame around having failed at this task and thus letting our parents or our ancestors down.

When someone feels shame, the brain processes this experience as a threat and it triggers their survival response (flight, fight, freeze, or fawn) – they react by making themselves small or trying to disappear, becoming defensive, shutting down or people-pleasing, to name only a few of the ways this can manifest (Davis, 2019). The two key areas of the brain that are activated by shame are the prefrontal cortex, the part associated with moral reasoning, and the posterior insula, the part that engages physical sensations in the body - feeling ashamed is often a visceral experience (NICABM). It is not surprising then that experiencing shame worsens the OCD cycle between obsessions and compulsions at many levels. It eats away at one’s ability to have positive self-regard and self-confidence, interrupts the processing of information that allows one to make accurate judgements and evaluations of threats, creates chronic emotional dysregulation, and exacerbates the OCD sufferer’s already heightened sense of responsibility for things that are beyond their control.

Incorporating these considerations into OCD treatment options

When it comes to OCD treatment, it can be comforting to know that there are promising developments being made in both the therapeutic and medical realms. For many years now, ERP (exposure and response prevention) has been considered the ‘gold standard’ in OCD therapy. The principle behind ERP is that with gradual exposure to their triggers while stopping themselves from performing compulsions, the individual learns that rituals are not necessary for the anxiety to be reduced and that they can tolerate the discomfort and uncertainty associated with their fears. More recently, other therapy approaches have emerged as also offering promising results for OCD sufferers, including ACT (acceptance and commitment therapy) and I-CBT (inference- based cognitive behavioural therapy). ACT focuses on teaching clients to respond to intrusive thoughts or obsessions in a healthier way, decreasing distress, and using mindfulness and acceptance as tools for living a life that is in line with their values (Holland, 2024). I-CBT focusses heavily on the cognitive processes leading to OCD, specifically on the development of the obsessional doubt – which arises “as the result of a dysfunctional reasoning narrative that is characterized by a tendency to distrust the senses and an over-reliance on the imagination” (icbt.online). I have found that it can be empowering for the individual to first be educated on the various treatment options, the theoretical foundations of each approach and what it will entail in terms of the work to be done. Feeling aligned with the approach being taken is an important factor in how successful OCD treatment can be.

Moreover, I believe it certainly is possible to incorporate this understanding of the role of shame into any therapeutic approach for OCD. This can happen at multiple different steps of the intervention, for example: when gathering history and seeking to understand how particular obsessions and fears developed, when striving to understand why these particular fears have taken hold and what they may represent for the client, when identifying the thought patterns and emotional cycles that keep the OCD alive, when working on strengthening the client’s sense of self and self-confidence, and when exploring how the OCD impacts the client’s relationships and support systems – again just to name a few (that is my go to phrase in this piece because there is just so much more depth we could go into!).

Shame thrives in the shadows, in our dark corners that we are afraid to show others, the parts that we fear will make us unwanted and unloveable. So, what better way to confront and start taking apart this beast than to expose it for what it is and understand how it came to be. As therapists, we can do this by helping clients reflect on and explore their relationship to themselves and the OCD (and relationship to the other identities they embody as children of immigrants), by explaining how shame develops and how to start identifying where it comes up for them, by helping them cultivate self-compassion and shed light on all the ways they were made to blame themselves for things that were never their fault, and by encouraging them to show up in session, in their relationships, and in their lives in all their multitudes and depth, without apology. Shame tells us to hide and become small, so it makes sense that the antidote to that is to be truly and deeply seen. For me this has looked like finally being honest with family and friends when my OCD might impact the way I handle certain situations, by finding spaces and people that do not require me to shrink in order to belong, and by owning this part of my life and my story instead of hiding it. Writing this blog post, for example, has been a huge step in this direction for me!

For children of immigrants who live with OCD, I believe we would be missing a huge piece of the puzzle if treatment did not address the complex ways that feelings of shame are connected to or even fuel certain aspects of our suffering. Of course, there is so much more to be considered than we can completely cover in this one discussion. Ideally we would also be talking about the importance of taking a trauma-informed approach to any modality of OCD therapy – and how shame is often woven into the experience of trauma and intergenerational trauma itself. What’s more, there has also been research into how attachment patterns impact the development of and experience of OCD (van Leeuwen et al., 2020). For those of you who know us at Amanda Neves Therapy and Associates, you know we love to talk attachment. Again – maybe another blog post! There is also the wider discussion of overcoming mental health stigma in diasporic communities and other cultural factors in OCD treatment.

Throughout my own journey, one thing I did not realize would be so valuable until I finally had it myself was being able to work with a therapist who has lived experience of OCD themselves. There is something profoundly impactful about being in the presence of someone who intimately understands your suffering – which also helps in starting to undo the pervasive shame that we carry. I have mentioned many times throughout this discussion the suffering piece of the OCD experience, and for good reason, there is value in having our pain witnessed and validated and we do not need to water that down. Keeping that piece in mind, I also find it important to say that the individuals I have worked with who live with OCD are some of the most conscientious and deeply thoughtful and considerate people I have ever met. So in that spirit, I will leave you with some words that have helped me feel seen and find deeper meaning in midst of my own struggles:

“OCD sufferers have beautiful, open minds. Wide open. Too wide open for their own tastes. The presence of unwanted thoughts is the product of a special kind of brain, capable of considering all possibilities” (Hershfield, 2013).

You are seen and you are valued for all that you are. I wish you had been told that sooner.

Resources to check out

The OCD Stories podcast (an incredible collection of stories from people who live with OCD and experts speaking on every topic related to OCD treatment you could imagine): https://theocdstories.com/

Brown Girl Therapy/Sahaj Kaur Kohli (the leading voice on mental health for children of immigrants – her work is brilliant and accessible!): https://sahajkaurkohli.com/brown-girl-therapy

“Has anyone seen my sharam?”

This piece by the Pakistani-Canadian artist known as Hatecopy (Maria Quamar) has always been one of my favourites. Sharam is the Hindi/Punjabi/Urdu word for shame. May we all be so audacious that we put our sharam down one day and are unable to find it again.

References

Abramson, C. (2023, March 24). Can Trauma Make People More Susceptible to OCD? https://www.treatmyocd.com/blog/i-have-ocd-and-i-have-also-experienced-trauma-can-i-be-helped

Cuncic, A. (2022, November 23). Shame and Guilt in OCD. https://www.verywellmind.com/shame-and-guilt-in-ocd-6829735

Davis, S. (2019, April 11). The Neuroscience of Shame. https://cptsdfoundation.org/2019/04/11/the-neuroscience-of-shame/

Hershfield, J. (2013, October 16). Harm OCD Part 2: The Revenge. https://www.sheppardpratt.org/news-views/story/harm-ocd-part-2-the-revenge/

Holland, M. (2024, December 20). ACT for OCD: How It Works, Examples, & Effectiveness. https://www.choosingtherapy.com/act-for-ocd/

How to Overcome Shame. (n.d.). National Institute for the Clinical Application of Behavioral Medicine (NICABM). https://www.nicabm.com/topic/shame/#:~:text=The%20Neurobiology%20of%20Shame,judgements%20about%20the%20self%20occur.

Migala, J. (2024, April 30). 85 Must-read OCD statistics in 2024. https://www.treatmyocd.com/blog/ocd-statistics#OCDsymptomsanddiagnosis

Soukhanouvong, E. (2024, June 19). Why I Struggle With Chronic Guilt As The Daughter Of Immigrant Parents. https://changewellpsych.com/blog/chronic-guilt-daughter-immigrant-parents/

Surles, T. (2025, March 7). Common Types of OCD: An Overview. https://www.treatmyocd.com/education/different-types-of-ocd#h-most-common-types-of-ocd

What is I-CBT? (n.d.). ICBT Online. https://icbt.online/what-is-icbt/

van Leeuwen W.A., G.A. van Wingen, G.A., Luyten, P., Denys, D., van Marle, H. J. F. (2020). Attachment in OCD: A meta-analysis. Journal of Anxiety Disorders, 70. https://doi.org/10.1016/j.janxdis.2020.102187