“1….2…3…4…5……1….2….3…4…5…come on…we don’t have time for this…you know it’s shut!” but yet it continues until it just feels right “1….2….3…4….5….. 1…2…3…4….5…..finally!” I exclaim as I leave for work…albeit much later than I planned. Another time “shu shut shut shut shut” I repeat standing in the dark, knowing full well that the light is shut off. I know because I can see my hand pushing on the light switch somewhere in front of me, however, I am compelled to flick the switch back on and then off again just to make sure. Yet even when I close the door behind me, I still doubt whether I really shut the light off. I mean ‘really’ shut it off because maybe I didn’t, I have no idea why I doubt everything I do or am so hard on myself.
The bully in my head
All I do know is that the bully in my head will not let me know anything but doubt and lack of confidence, and shame, especially when my kids see me struggle and ask me why I have to do weird things. Only I don’t have a good answer for them, or at least I didn’t use to. That was before I was diagnosed with OCD, as well as ADHD and depression, which make the maelstrom in my head, even more, interesting to deal with on a daily basis. The thing is, even when you get verification of what you are suffering from, it never really goes away, something that I am reminded of all too frequently. This is one of the reasons I am writing this now. Even after sorting the words in my head until they feel just right to begin writing them down, I know it is hard but I must do it.
This is a reminder, even if just to myself, to not get complacent and not give up, because the OCD bully may lie dormant, but it can always rear its ugly head when I least expect it, not only affecting me but my loved ones as well. This is why I need to practice my ERP and mindfulness and never forget my support system, even when I think I don’t need to. Especially when I don’t think I need to.
The internal struggle
One of the most devious things OCD does is manifest internally instead of externally where others tend to notice, or may offer to help. When your OCD takes the shape of incessant rumination, dwelling, or just all-around self-loathing and self-destructive thoughts, it can be much more painful and much harder to recognize and ultimately treat. If you can think up a scenario, chances are there are those that have experienced that as a theme, obsession, or compulsion with their OCD at one time or another. And the extra tormenting part is that the themes can vary in subject and intensity many times daily and when you are feeling good and not indulging in your OCD enough it can make you think that you actually like or approve of your intrusive thoughts and obsessions. It seems as if OCD won’t rest until it is sure I am suffering from something, some form of obsession.
OCD is not just a disease of obsessing about germs.
OCD can vary from extremely debilitating to relatively minor, but the good thing is that the most effective treatment is the same, and that is ERP. Everyone who has experienced OCD has a story, some more life-changing and relatable than others. Each story is personal and is important to share, this one just happens to be mine.
OCD: A family affair
In some of my earliest memories, I can recall sitting at the table watching my mother check the stove knobs after dinner to make sure they were off. I never thought much of it, I just thought it was normal or her being extra safe. Sometimes she would check things with a little rhyme or make it like a song, like when first memorizing the ABCs, which made it seem more whimsical or like a game somehow.
It was only as my brother and I got older, we started having similar tendencies, checking and rechecking. This left us unsure why we felt compelled to do so. I tended to dismiss it as just a habit. That was until it became something much more than that. It wasn’t something we dared talk about or even mention, not even my obvious ADHD tendencies. I assumed that wasn’t possible with my grades, nor was it possible that I could have OCD because I didn’t wash my hands constantly or obsess about germs. I thought that I couldn’t possibly have that. And even if I did, isn’t that genetic? I was confused as to whether or not that meant someone else had it who was in my family, and that couldn’t be true, could it?
That’s the thing, as things tend to gradually get worse you kind of adjust little by little to the new normal.
It can be easy to forget what it was like to not be living with your condition or even know that’s a possibility until someone else reminds you of how you used to be. Until someone reminds you of how good it was. I noticed throughout my childhood that I was always my worst critic and never gave myself anything resembling self-love or respect. I’ve always been someone who repeatedly used self-deprecating humor and put myself down. I did this, partly because I figured it would head others off at the pass with their insults, partly to take the spotlight off of me, but mainly because the intrusive thoughts in my head told me they were true.
OCD wants you to doubt yourself and isolate yourself so that you interact with your intrusive thoughts, obsessions, and compulsions to keep feeding them and make them stronger and stronger.
Recognizing that is what your OCD is doing and trying to break the cycle, not once, but repeatedly is the hardest part. This is not something that I recommend that you should try to do alone. I was stuck on the hamster wheel of doubt and rumination and had been pulling farther and farther away from my friends and family, choosing to withdraw into my shell and distance myself from those I cared about the most. I was embarrassed. I didn’t know what was happening. Embarrassed I didn’t know how to fix it and most of all embarrassed that it was going to take my life if I didn’t get help soon.
Finding hope
I remember the day I found out about NOCD, I was watching a Call of Duty Zombies video with my son and the Youtuber paused to mention that he had OCD and had been seeking help through NOCD. As he described his affliction and the various traits, I noticed the striking similarities to what I had always been experiencing and which was getting exponentially worse during isolation. I checked out the NOCD app and tuned into a few of the live stream Q&A’s which led to me ordering Dr. McGrath’s book. A few days later I scheduled my free consult with NOCD.
However, it wasn’t that simple. The day of my phone call, I almost didn’t call, thanks to my good old friend OCD. I had planned to change the transmission fluid on my jeep in the morning with plenty of time to clean up and make the call, but my OCD bully didn’t like that. Nothing felt just right that entire morning and what should have taken me an hour maximum took almost 6 hours. The whole time I kept thinking, what if I don’t have OCD? What if I am just wasting their time that could be better spent with someone who actually has OCD? Maybe I’m just broken and nobody can fix me. I mean who spends that much time checking things, saying silly rhymes, or needing to count to a certain number? What if they tell me that I’m just crazy and they can’t help me, then what?! What if…does this sound familiar?
However, I stopped what I was doing and forced myself to dial into my appointment. Okay, it may have taken me several times dialing and then hanging up and repeating until I committed and stayed on the line. However, the sense of relief from even just being diagnosed was incredible. Yes, my OCD, a moment later had me doubting whether I actually had OCD (and still do), but again, sound familiar? That first step of actually getting up the courage to call was one of the hardest; well next to starting ERP, and is a step that many people never take because they are afraid or feel ashamed or feel alone in this or weak for seeking out help, but that couldn’t be farther from the truth.
Taking that first step and admitting you need help and seeking it out is one of the most challenging (especially mentally) things you can do because your OCD bully will fight you every step of the way.
Since OCD has such a high co-morbidity rate with other mental illnesses, taking the leap to seek out help for it led to finally being treated for my ADHD and depression as well. Something that would have never happened had I not picked up the phone and made that call.
After my consult, I checked in with my member advocate, Mollie. Mollie asked me all about myself and my experiences and told me her story and said I could reach out to her at any point if I had any questions or concerns. She made me feel not so alone in this process even before I started my first therapy session, and has been a friend ever since. I even went on to co-host a few live stream Q&As with Mollie as a way to try to help others who suffer from OCD or are on the fence about seeking help.
Learning compassion from others and for myself
That’s the thing I’ve noticed is that most people in the NOCD community tend to want to give back, even as they continue to suffer and work hard to keep their lives on track and not bend to the will of their OCD. I think it’s because we all understand that this is not by any means a sprint or a one-and-done treatment.
OCD never really goes away, but with help and practice you CAN take your life back from OCD and be able to do more of what you want to do again and not avoid feelings or situations because your OCD bully is intimidating you.
We also understand that there are going to be stumbles and setbacks along the way, but that is okay and doesn’t mean we are not making progress, even when our brains want us to doubt ourselves and our determination. We tend to be our harshest critics, but we need to be kind and supportive of ourselves and one another in this journey. OCD makes life hard enough as it is, we don’t need to make it even harder. We understand that sitting with uncertainty is never easy, and every time I advise someone to do it, I know how silly and childish it may sound, but it is absolutely necessary and very difficult to do.
Only recently I thought I was doing well maintaining my OCD and had been focusing on getting my ADHD and associated mood swings under control, only I was wrong. Over the holidays, whether it was stress, lack of sleep, or some combination of the stars misaligning with the jetstream or something, my OCD bully reared its ugly head hard. My fiance’ had said something that in retrospect was an off-hand comment due to her own stress and worries, but my OCD picked it up and ran with it. I could not sleep that night as I ruminated more and more, foolishly interacting with my ROCD obsessions that I thought I had conquered, sinking further and further into doubt and depression, and anxiety and everything that I try to remind others not to do when I respond to their posts. For the next 24 hrs or so my intrusive thoughts kept building and building as I kept going down rabbit hole after rabbit hole until I popped my top in true pressure cooker form. My OCD turned what should have been a fun family event together into a stressful and awkward experience that I can never get back. We can never get back those moments.
I had become complacent and not practiced the tools NOCD had given me, and so I added another tarnished memory to my stockpile, thanks to giving in to my OCD Bully. I would love to be able to state with absolute certainty, that this will never happen again, but I know better than that. My OCD is not going away, and it may or may not have negative effects on me and my loved ones, but I have to live with that uncertainty, and accept it, because interacting with the thought otherwise (to prove or disprove) would be only be feeding my OCD bully more.
I must sit with it and let the thought go.
The thing is, OCD recovery is not a sprint, it’s more like an endurance race. Yeah, I know, I know, that’s a very cliche thing to say, but it’s entirely accurate in the case of OCD. Like an endurance race, having the right tools will help you keep moving forward. ERP, mindfulness, being cognizant of your obsessions, compulsions, and themes, and recognizing intrusive thoughts or false memories for what they are will be important parts of the recovery process. Having your pit crew which includes NOCD therapists, peer advisors, family, friends, and interactions on the NOCD app to help keep you going, even when you want to give up, is a necessity. You can’t win the race all by yourself, no matter how hard you try. You can’t expect to reclaim what OCD has taken from you immediately, and pushing yourself too hard or too soon, can be detrimental to your overall recovery journey.