Let’s face it, all forms of OCD are tough to deal with for the sufferer. There is no one form that is worse or easier than the other. An OCD specialist that I work as a coach for here in Denver always says, ‘be careful what you wish for’ whenever I comment how much easier it would be to have any other obsessions than my own! The type of OCD that I have has some pretty specific triggers that are not necessarily shared amongst all forms of OCD. This can be tough on the individual who suffers, as well as the people around them in their support system. We are all sensitive to people’s words and comments when it comes to our illness no matter what form it takes, but here are a few triggering statements that you should always avoid when you are talking to someone with Pure O/Intrusive thoughts.
1. I don’t see you doing compulsions…you must not have OCD as bad as other people I have seen who have it.
This one is tough to take when you have ‘Pure O/Intrusive Thoughts’. First of all, it probably took us a long time to figure out that we even had OCD because we did not have outward compulsions that would help us identify that we have OCD. We just got these weird and horrible thoughts that we believed for so long were a reflection of our own character. Our rituals took place in our mind, and most of these rituals do not even feel compulsive. Next up, trying to communicate our disorder to others. People do not understand OCD in general and usually identify it with hand washing or checking doorknobs. Our explanation can be terrifying because we have to divulge some huge secret of a horrible obsession that has ruled our life for so many years. Our ultimate fear is that the person we are telling it to will not believe we have OCD and they will think that the obsession is real. (which I will elaborate on later in this blog). We feel the need to have to go into drastic detail about our mental compulsions in order to stave off the idea that people may not believe we fit the OCD profile because of our lack of outward compulsions. Mental rituals are absolutely exhausting. People who have Pure O/Intrusive thoughts have usually mastered the ability to ruminate and perform mental rituals for more than 12 hours per day while maintaining a life that looks just fine to the outside world. We do whatever we can to not allow our rituals and obsessions to be viewed by anyone around us. When we are told that we must not have OCD that bad because we don’t perform outward compulsions, it makes us feel like everything we have done to hide the shame and guilt of our obsessions from the world was actually a bad thing. It also makes us feel that maybe our disorder is not that debilitating and perhaps we do NOT have it that bad. We don’t have xrays, surgeries, or physical treatments to prove how bad we have suffered. It is scary to try to explain a disorder to someone that brings so much shame and guilt only to feel as if it is being minimalized in return.
Keep in mind that every person’s battle with OCD is different. OCD takes on many different forms in regards to obsessions and compulsions, but the commonality amongst all sufferers is the shame, guilt, and embarrassment. When talking to someone with ‘Pure O’, try to do your best not to exacerbate those negative emotions.
2. ‘Pure O’ doesn’t exist!
Believe it or not, I have had several people say this very thing to me. The reason why someone would insinuate that ‘Pure O’ is not a form of OCD is because there is a large gap in communication on what to call this type of OCD between clinicians and the Pure O community. Clinicians and professionals do not like the term ‘Pure O’ because it implies that this form is purely of obsessions and not compulsions. As stated above about our mental rituals, this is just clearly not the case. The obsessions and compulsions are strictly carried out in the mind by ruminating and/or rituals that can be hidden from others with repetitive thoughts. OCD is comprised of obsessions + compulsions, so it seems that if someone only has obsessions that they would technically not have OCD. I understand their point in not wanting this type of OCD to be called ‘Pure O’. The discrepancy lies in that most individuals find out about this type of OCD through websites and articles that originally referred to this type of OCD as ‘Pure O’. We are so relieved to find out that we have an actual diagnosis and that we are not just insane, that we immediately identify and label ourselves as ‘Pure O’s’. Whether or not the name is accurate, it doesn’t matter to us. Our community of OCDer’s know exactly what it means to have ‘Pure O’ and we feel connected to others that understand that title.
Other than the flaw in the name, the reason why the statement that ‘pure O doesn’t exist’ can be damaging is because of a secondary fear that we don’t really have OCD and we are just mutants. It is inevitable that when I am confronted with an OCD relapse or episode, I will ruminate for a time that perhaps I don’t have OCD and these horrible thoughts are in fact real. Mostly, I will go into some cycle where I worry that I’m ‘lying’ and ‘faking’ the disorder only to hide the fact that I’m capable of conjuring up such disgusting thoughts. This is completely normal for individuals with Pure O, however at the time, it feels very real and scary. So, anytime anyone questions the validity of ‘Pure O’ or says that they have heard that type of OCD doesn’t exist, it can send me into a tailspin of guilt and doubt that someone along the line has lied to me and made up some disorder to cover the fact that I am a horrible person. Now, this may seem dramatic…but trust me, I am not the only one that responds this way.
Please make sure you never question whether or not ‘Pure O’ is real. You don’t have to agree about whether the name makes sense, just please try to never insinuate that that type of OCD does not exist.
3. ‘Do you really believe that you are <insert Pure O obsession>?’
For the love of everything that is holy, please do not ever ever ever ask someone with ‘Pure O/Intrusive Thoughts’ whether or not they believe they are what they worry about or are capable of the act they are worried about! I would have to say out of everything that you could say to someone, this would be the most likely to send someone straight into relapse. A ‘Pure O/Intrusive Thought’ obsession has nothing to do with the individuals’ character. There is no truth whatsoever to what the person obsesses about for months and sometimes years at a time. ‘Pure O’ OCD floats around from topic to topic that may make someone’s life hell and then hooks onto something that causes the individual to question everything about who they are morally and ethically. In my lifespan of having ‘Pure O’, I have worried that I was gay, a violent murderer, a rapist, a molester, a road rage-aholic, racist, sexist, an animal abuser, wanted to partake in incest, a Satan worshiper, wanted to partake in beastiality, a cannibal, worried that I have AIDS, worried that I wanted AIDS to spread it to others, and many more things that have nothing to do with my actual wants and desires. I have gotten to the point now in my journey with ‘Pure O’ that I can see the thoughts pop into my head, but I can recognize them as OCD and not react with anxiety and worry that they are real. This has taken years of practice. Sometimes I will get hooked into a cycle, but not as often anymore. The thoughts are heinous. They surprise me that I could be such a disgusting person to think such things, and that is what the Pure O wants me to feel. I have to remember that having OCD is an illness and it has NOTHING to do with who I am as an individual. Chrissie does not want or desire those things, but Chrissie’s OCD wants her to believe that she does.
I have had several occasions where I will tell someone about a specific obsession and they will look at me questioningly and ask…’well, do you think you are gay?’ or ‘do you feel like you want to hurt people?’ Of course, the rational side of Chrissie thinks, ‘well no…duh!!’
But the ‘Pure O’ side of Chrissie is saying this:
Oh my god why are they questioning me, did they not just hear that I have a disorder, do they not believe that I have a disorder, do they really think that I am like that, do I need to explain further, no if I explain further they will think I’m trying to cover something up, do I need to direct them to a website that will prove that the type of OCD that I have is really for real and it isn’t just something that I want, are they looking at me funny, oh god they are not going to talk to me anymore because they think I am a raging and violent girl stuck in the closet and they are going to be my next victim, I’m trying to act calm but I don’t think they fully understand how this has nothing to do with me, but didn’t they hear my explanation of OCD or do they not remember what I said, maybe I should explain it again, but then they may think I am using it as an excuse…..OH MY GOD, AM I USING IT AS AN EXCUSE MAYBE I DON’T REALLY HAVE OCD AND THE DOCTORS JUST LIED TO ME TO GIVE ME SOME SORT OF FALSE SENSE OF HOPE OR TO COVER UP THAT I AM A RIDICULOUS AND HORRIBLE PERSON THAT JUST CANNOT ADMIT THE TRUTH ABOUT WHO SHE IS!!!!!
….okay, so I think you get the point.
Please don’t question people about the validity of their obsession. If they tell you what it is that they are obsessing about, they are trusting you much more than you could ever imagine. Believe me, we all wish we could hand-pick our obsessions in order to make ourselves feel better about having them, but OCD does not work that way.
4. I saw this 20/20/Dateline/Dr.Phil episode and those people with OCD seem REALLY sick…you seem pretty normal, maybe you just don’t have it as bad as other people.
This is one of my favorites. I would like to share my disdain about 20/20 and any other show like it. These shows are the best at showing the extremes of anything and everything to invoke fear and misinformation into their viewers. I have seen plenty of shows about OCD in that format and can barely sit through them. They probably shot hundreds of hours of footage and then decided to play the few clips where the individual looks completely insane and cannot function. Sure, it is good to see that side of OCD, but that side is rarely shown by an individual to the public. In fact, OCD is such a silent disorder because we are so ashamed and embarrassed about our symptoms that we do whatever we can to cover them up. Yes, panic attacks are ugly and we do not ever want anyone to witness us when we have one. But, that is a perfect scene to blast all over the television to show you how severe OCD can be. You watch these scenes and think, ‘wow, those people cannot function at all in real life!!’ This is simply not true. Most of my panic attacks and anxious moments have occurred behind closed doors. This is how I know most of my fellow OCDer’s to act when they are experiencing heightened symptoms as well. Out of view of the public. These shows are sensationalized and do not necessarily portray what life really looks like for someone with OCD, especially for individuals with ‘Pure O’.
Why is it any different for ‘Pure O’ sufferers? Most of our obsessions are gruesome and horrible. We cannot believe that we are capable of producing such horrendous thoughts. A common compensation is that we build our lives up on the outside as flawless and perfect as possible. I was so mortified by the idea that I could not control my thoughts when I was a teenager that I did everything I could to portray the life of a successful and driven young lady. I figured as long as I could cover up that I was a horrible person and keep those thoughts to myself, I could at least try to buy some time before suicide would become my only option. And yes, I knew at a very young age that if I ever had to confront and admit my thoughts to anyone, my only alternative would be to kill myself and not think twice. Individuals with ‘Pure O’ are so tortured about who they think they are according to their OCD, that they will do anything and everything to the outside world to convince others that they are the opposite. It isn’t as if we are putting up some fake front, either. I like to describe it as becoming larger than our personality in order to compensate. The individuals I meet with ‘Pure O’ are usually intelligent, driven, successful, funny, personable, popular, and down-to-earth. These traits are part of who they are, but can also be exacerbated to make up for the doubt, guilt, and anguish about what is going on inside of their head.
When anyone mentions to me that they saw some Dr. Phil episode about OCD, I usually stop them before they can talk further. If you meet someone who is diagnosed with OCD, chances are they have suffered more than many individuals will in their entire lifetime. Even though you may never see their scars and wounds, their battle with OCD deserves much respect and honor. These sensationalized shows do not even scratch the surface of what majority of people who have OCD’s lives are like.
5. Well, if you know that you aren’t or you won’t <insert Pure O obsession>, then just stop worrying about it!
Gee, is THAT ALL? Why didn’t I think of that!
I know people just like to offer obvious advice, but when was the last time you were upset about something and someone told you to just ‘get over it’ or ‘stop worrying about it’? I bet that made you feel annoyed, right? Now imagine that you have had the same irrational, ridiculous obsession stuck in your mind for 3 years and someone says, ‘why can’t you just stop worrying about it if you know it’s not true!?’. This makes me have violent, intrusive thoughts toward that person that are unrelated to OCD. Just kidding, I am not violent (I’m reassuring myself now.) When you tell us to ‘just not worry about it’, it makes us feel like every person in the world has this capability to stop worrying at the drop of a hat and we are just weak and stupid and cannot get a grip. It actually perpetuates the cycle by encouraging thoughts such as, ‘well, why can’t I stop worrying that I had sexual thoughts about a religious figure?? Since I just cannot stop worrying easily, does that prove that I could turn into a pedophile one day? If I didn’t want to scream those racist and derogatory comments to my coworkers during the meeting today, then why can I not stop worrying that I did?’.
I look at this statement as the equivalent to someone going to a paraplegic and saying, ‘oh, it’s just your legs that don’t work, just get up and walk! It’s mind over matter!!’. That seems ridiculous, right? Well, this is what it feels like when I am told to stop worrying about something that is not under my control. We cannot just stop the cycle without applying therapeutic tools and/or medication. You cannot outthink and outsmart OCD while giving into the obsession. I can tell my sister all day long that I am worried that I wanted to run over kids in my car earlier and I know it isn’t really me, it is my OCD—however, that doesn’t make the thought and the worry stop. The more I try to convince myself that it was OCD and not the fact that I am a violent driver that likes to maim people with my vehicle, the stronger the thought gets. WELL, YOU WOULDN’T STILL BE THINKING IT AND WORRYING ABOUT IT IF YOU REALLY DIDN’T WANT TO, RIGHT? MAYBE YOU SHOULD GET IN YOUR CAR NOW AND DRIVE THROUGH THE PARK AND SEE IF YOU REALLY DID FEEL THOSE URGES OR IF YOU MADE IT UP?! MAYBE YOU REALLY DIDN’T WANT TO AND YOU JUST THOUGHT YOU DID? Thus, the argument continues.
The therapy designed to relieve and treat OCD is the exact opposite of ‘just don’t worry about it!’. It is called Exposure Response Prevention (ERP). This therapy teaches you to invite the worry and learn how to sit with the anxiety that the worry causes without reacting. If you do not react to your own brain as it is running wild with the horrific thoughts and are able to tolerate the crippling anxiety, it will begin to lessen the effect the obsessions have on you later. Each time you invite and allow the thoughts to provoke the anxiety and are able to sit in it without reacting, the effect it has on you will get lesser and lesser over time. It is a very difficult and painful therapy. Individuals with ‘Pure O’ are confronting fears that they have been ashamed of and afraid of for years. They have spent and designed their entire life around avoiding these fears. Even the idea of trying to face them can cause debilitating anxiety. However, the therapy is extremely effective and can teach sufferers to manage and live normal lives if they are willing to take the risk.
If someone trusts you enough to disclose their OCD obsessions, instead of offering them solutions, ask them what you can do and say that will help them to get control of their OCD. Now, there is a fine line between helping someone with OCD and furthering their disorder by giving them too much reassurance, but that is a topic for another blog! For now, remember never to use the 5 phrases I have listed above to someone who is battling or may be struggling with OCD.
Each one of us will struggle with something that causes us strife at some point in our life, and I believe that the more knowledge we can have to help each other, the better equipped we will all be to become better friends and supporters. I hope that this blog helps you to feel better equipped to talk with individuals who have OCD.
Please feel free to share other things that people say to you about OCD that you wish they wouldn’t in the comments below!
Thank you for taking the time to read!
Mental Health Advocate/Public Speaker/The Stigma of Mental Illness Radio/Mental Health Peer Consulting/CBT and ERP Coach: Effective OCD Treatment