Daniel Safavi, MA, AMFT, of the OCD Center of Los Angeles, discusses how social stigmas and misconceptions can pose unique challenges to interpersonal connection for someone with OCD. Also included are some helpful guidelines to consider when determining whether to self-disclose.
OCD and the Basic Human Need for Connection
Social connection is a basic human need, and a big part of connecting with others is being vulnerable from time to time. Being vulnerable produces some distress. This is true for all of us. However, those with Obsessive-Compulsive Disorder (OCD), have the added challenge of their condition often being misconstrued by others. In other words, even when someone with OCD musters up the courage to open up about OCD-related challenges, others may respond with invalidating comments, even if they didn’t intend to do so. This is often due to their ignorance around the subject. This can leave the person with OCD feeling alienated, which is very unfortunate, since a pain unseen is a constant fiend.
Different Levels of Understanding
We all have things we are embarrassed or ashamed about. But most of those things can at least be intellectually understood, and perhaps even emotionally understood, by another person. In fact, the listener may share a similar experience or may know of someone else who did. For example, let’s say that one of your friends feels shame around not going to graduate school and getting an advanced degree. Even if you yourself don’t experience that same trigger, you can probably at least understand that shame and empathize with the experience of feeling inadequate or being self-critical. You may even know of other people who struggle with similar issues that your friend has.
OCD, on the other hand, is not only less common than many stressors and mental health conditions, but it’s also not as well understood by the general public. Even if you don’t struggle with substance abuse, for example, you can at least conceptualize what it’s about and maybe even imagine a tiny bit of what the pain of addiction may be like. After all, we’ve all experienced cravings and attachments, even if they never rise to the level of a clinical addiction.
Unfortunately, OCD still largely hangs in the shadows. This is a problem because, when people don’t understand something, it’s often harder for them to empathize with it, let alone offer helpful support. In fact, I’ve even come across some therapists who have significant misunderstandings about what OCD really is, given that their exposure to it is often limited to a course in graduate school or a description in a book.
Hide-and-Go-Seek
According to Ziegler et al. (2021), it currently takes an average of 17 years for someone with OCD to receive adequate therapy. 17 years! Can you imagine if someone with depression, or anorexia, or substance use (or a physical health condition, for that matter), waited 17 years to get adequate treatment? The delay in getting effective OCD treatment is in large part due to three main reasons: a lack of awareness around OCD, the lack of adequate training of many therapists, and the fact that it’s often possible for those with OCD to conceal their symptoms in an attempt to “pass” as one with the crowd.
Indeed, the opportunity to hide OCD symptoms is a big reason why the condition has flown under the radar. Given that compulsions can be purely mental, it is no wonder why many people, even therapists without OCD expertise, may have no clue that the OCD sufferer is in fact suffering from OCD. Of course, OCD symptoms often do bleed out from time to time, especially if the severity is sufficiently high, but OCD is unique in the degree to which its symptoms can be masked. I’ve heard many stories of those with OCD who have concealed their symptoms to such a degree that even their closest friends and family members have but a tiny glimpse into their suffering.
That’s not to say that other mental health issues can’t also be concealed. But the threshold until they become noticeable tends to be lower. In other words, most other conditions produce observable symptoms earlier. The restrictive eating habits of Anorexia Nervosa, for example, will become noticeable if the severity is anything but minimal. The same is true for Substance Use Disorder, Bipolar Disorder, Major Depressive Disorder, Autism, ADHD, Schizophrenia, Social Anxiety Disorder…the list goes on.
The OCD sufferer’s attempt at hiding is not always a compulsive attempt at avoiding discomfort (although it can definitely be that, too). Often times, the attempt is also driven by a somewhat rational deduction that others will minimize or even outright denounce OCD symptoms as weird, controlling, delusional, selfish, weak, spoiled, neurotic…or pick any other judgmental label that might be uttered by some holier-than-thou nitwit.
The other factor to consider is that OCD symptoms are often more idiosyncratic than the more “typical” triggers that are associated with other mental health conditions. Whether it’s washing one’s hands many times a day, compulsively questioning the meaning of life, fixating on the sensation of overly tight shoes, or another compulsion, OCD symptoms seem a lot less “comprehensible” than craving the high of a drug, restricting one’s eating due to body image insecurities, or struggling with the emotional highs and lows of Bipolar Disorder. With that being the case, someone who listens to an OCD trigger may not express as much empathy as they would for another condition. The saddest thing about OCD is not just the suffering caused by the condition itself, but also that some people want to open up to others but don’t because they have been or are afraid of being judged and invalidated instead of heard with a sense of curiosity and empathy.
Consider some common OCD subtypes below, along with examples of how an uninformed listener may respond inadequately to the OCD person’s attempt at disclosure.
Just Right / Symmetry OCD
*Person with OCD: “It’s hard to explain, but I get extremely anxious about things needing to look just right and be in certain places. It’s really tough on my mental health.”
*Uninformed Listener: “Oh no I get it, I’m so OCD, too! I like organizing things. Wait, let me guess, you must also be a big fan of The Container Store, am I right?”
Relationship OCD
*Person with Relationship OCD (ROCD): “I often wonder whether my partner is right for me, and if there’s someone better out there. I even think I might be a bad person if I stick with my current partner while feeling this ambivalence.”
*Uninformed Listener: “It kind of sounds like you’re not fully into her. Maybe you should break it off with her or at least take a short break to think about things more.”
Existential OCD
*Person with OCD: “I often get anxious thinking about what the meaning of life is and what reality really is. I even have thoughts about things like if I really exist. Do you ever think about stuff like that, too?
*Uninformed Listener: “Uh, no, not really. Dude, I think you need to stop analyzing so much.”
Harm OCD
*Person with Harm OCD: “I obviously would never do this and don’t want to do this at all, but every now and then I get an intrusive thought about hurting someone. It really bothers me.”
*Uninformed Listener (while slowly backing away): “Um, yeah, sure I understand. Maybe you should talk to your therapist about that. Anyways, I have to go. It was good seeing you.”
To Disclose or Not to Disclose? That Is the Question
Just to be clear: I am not necessarily saying that you should disclose your OCD with others (or anything else that’s personal, for that matter) if you don’t want to. Each of you has your own unique life circumstances, and so it would be out of place for me to give such a blanket prescription to everyone. I have no clue how beneficial or how harmful it would be for you to share this personal side of yourself. This article is not meant to replace psychotherapy nor your own wisdom on this nuanced matter.
A colleague of mine recently reminded me that OCD can hijack almost any behavior, even if it’s a usually positive one, and turn it into a compulsion. So, before you decide to disclose, you might want to ask yourself why you are disclosing. Are you seeking connection? Are you advocating for yourself? Are you doing exposure therapy? These are all healthy intentions…
…But it’s also possible that your OCD mind has caught hold of your intentions to disclose. Does your OCD hope that, by disclosing, people will cater to your compulsions? Is your OCD trying to control other people’s impressions of you so you can minimize the risk of rejection? Does your OCD think that you “should” disclose, simply because it seems like the “right” thing to do?
Whatever the case may be, it’s important to check your intentions every now and again.
To All the OCD Souls Out There
If you are someone with OCD who wants to talk about your OCD with trusted allies, I encourage you to be discerning about what you choose to disclose and what you choose not to disclose. Vulnerability is not necessarily the same thing as openness: I’ve seen people openly talk about very private matters in a very nonchalant way, either because they truly aren’t embarrassed about such topics or because they are disconnected from their bodies and so their openness is an ironic way of avoiding being vulnerable: by spewing out words as a verbal shield, they can “hide in plain sight.”
However, there’s no perfect, “just right” way to disclose or be vulnerable: it’s a game of trial-and-error to a large degree. Sometimes, you’ll look back at your response and realize you disclosed too much; other times, you’ll look back at your response and wish you had disclosed more. It’s ok. As long as you heed common sense (in most cases, for example, I advise against disclosing very personal details at work), then treat disclosure as a game more than as a graded test. Besides, those who truly care about you will still care about you at your worst. So approach disclosure with less of a high-stakes, high-pressure mentality and more as a way to connect with others and filter in true allies while filtering out those who aren’t true allies.
Just realize that, given society’s current ignorance about OCD, you may have the added burden of needing to educate others about your condition and standing up for yourself when necessary. Unfair or not, it’s the card that has been dealt. The good news is learning to navigate these added challenges will make you a stronger, wiser, and more ethical person. And as you gain more experience learning how to connect with others despite this burden, a revitalizing energy will flow through you that will make you more healthy and alive.
References:
Werner, L. (2021). “I’m so OCD!”: A Qualitative Study Examining Disclosure of Obsessive-Compulsive Disorder. UWL Journal of Undergraduate Research, 1-20. https://www.uwlax.edu/globalassets/offices-services/urc/jur-online/pdf/2021/werner.lily.cst.pdf
Ziegler, S., Bednasch, K., Baldofski, S., & Rummel-Kluge, C. (2021). Long durations from symptom onset to diagnosis and from diagnosis to treatment in obsessive-compulsive disorder: A retrospective self-report study. PLOS ONE, 16(12), e0261169. https://doi.org/10.1371/journal.pone.0261169
• Daniel Safavi, MA, AMFT, is an associate marriage and family therapist at the OCD Center of Los Angeles, a private, outpatient clinic specializing in Cognitive-Behavioral Therapy (CBT) for the treatment of Obsessive-Compulsive Disorder (OCD) and related anxiety based conditions. In addition to individual therapy, the center offers eight weekly therapy groups, as well as online therapy, telephone therapy, and intensive outpatient treatment. To contact the OCD Center of Los Angeles, click here.
6 Comments
having a now 25-year-old daughter diagnosed with severe OCD when she was 8, I was “touched” ( more like hit in the head with a sledgehammer!) how accurate and on point your article is…..it offered hope and affirmation to hear the different levels of OCD there are and pains me to REALLY understand how much my child has suffered. My wife and I have experienced almost 17 years of hell watching her go through hell and unable to communicate to ANYBODY ELSE what was happening. It hurts when loved ones, family members, grammas and grandpas, friends, and even fellow Church members “offer” up their opinions on what was happening to our daughter….” oh its just a phase”, “you need to discipline her more” “she’ spoiled”
Hi William,
I’m glad to hear you resonated so deeply with the article, and that it offered you hope. Yes, hearing about other OCD-subtypes (and perhaps even other mental health conditions) can sometimes bring even more awareness and understanding of what others are going through. Developing more awareness, understanding, and communication around OCD are great steps toward positive change. Thank you very much for your comment.
Good day
How would one be diagnosed with OCD?
Hi Shabeera,
Good day to you, too. To be assessed for OCD or other mental health conditions, one would have to see a mental health practitioner who is qualified to assess and diagnose individuals. Thank you for your question.
Great article. Touched my heart.
Spoke in details about thoughts of people with OCD.
Hi Palani,
Thank you very much for your comment. I’m glad you liked the article. I believe that more awareness around the experience of those with OCD is very helpful for those with OCD as well as for those who know of someone with OCD.