What I wish I knew about OCD earlier

What does obsessive-compulsive disorder look like? If you had asked me 10 years ago, my answer would have been quite different. Everything I knew about it I learned colloquially or from the TV show Monk. I thought it meant someone was a germaphobe and very neat/orderly. I heard “anal retentive” and “neat freak” as synonyms.

I have lived with OCD for almost all my life, but it took about 20 years between first symptoms and diagnosis because it is often misunderstood culturally and clinically. The average time between the age of symptom onset and the age of treatment is 14-17 years ¹ (NOCD), and it affects about one in forty adults ² (IOCDF). I tried so many different things over the years for my wellness, and finally understanding and receiving OCD treatment has been the biggest lever to improve my well-being.

In the OCD advocate community, there are currently discussions around the misuse of “I’m so OCD” and “I let the intrusive thoughts win” in media. We believe it is beneficial if everyone has an improved understanding of the disorder. Here is what I wish I knew earlier and what everyone could know now.

Understanding OCD

OCD does comprise all three letters:

Obsessions: intrusive and unwanted thoughts, images, urges, or emotions that bring anxiety and distress.
Compulsions: feeling compelled (having to) to do something to relieve that distress, even if the actions go beyond what is seen as socially acceptable or the person’s values.
Disorder: the thoughts and actions (or inactions) become so difficult that they disrupt the person’s life.

Obsessions

When we say conversationally that we are obsessed with something, it can usually mean that we love it (“I’m obsessed with Severance right now!”) or have an unhealthy attachment to it (“Ugh, he’s obsessed with her. Such a stalker!”).

In terms of OCD, an obsession is an idea that the brain just won’t let go of and brings up over and over and over again. In therapy, those with OCD and/or anxiety are often encouraged to name their brains in order to begin separating these thoughts that don’t align with their values (ego-dystonic) ³ from their “real selves” and thoughts that they truly believe (ego-syntonic).

I personally ascribe mine to “Dolores” (from Harry Potter, for whom I had a particular dislike). So instead of me saying, “You’re so terrible, you’re going to screw up every relationship forever, and everyone will leave you.” Dolores was the one who said it. Images of myself stepping in front of a semi or being hit by a meteor are not ones that I conjured, but rather what Dolores wanted to show me as a bully. Or constant urges to move my clothes and fidget because of “not just right experiences” (NJREs) again are just Dolores being a jerk. Any of these ego-dystonic thoughts, feelings, urges, or emotions are the obsessive parts of the OCD brain.

Compulsions

In German, the word for OCD is Zwangsstörung, with “Zwang” translated into English as “force”. This is what a compulsion feels like. It feels like you are forced into action. Sometimes, it really is like portrayed in TV and movies—a person may feel forced to wash their hands and scrub down surfaces if they have contamination OCD. For others, though, there might be a strong need to ask for reassurance, or touch things in a certain order, or follow an exact routine, or research until “the answer” is found.

Compulsions actually work! For a little bit. They do provide temporary relief, like scratching an itch or a glass of water when you’re parched. Slowly but surely, however, these compulsions wear a groove in the brain that says that this thing (whatever it may be) is BAD and needs to be avoided or fixed for your well-being. The next time the thing comes around, it might feel even worse than before, as the brain is trained to believe that it is terrible.

Disorder

Many OCD therapists use Subjective Units of Distress (SUDs) to measure how patients are feeling with anxiety and pain from OCD. Whether 0-10 or 0-100, the idea is to have numerical reference points to life being ideal and amazing, to a little distressing, to feeling quite rough, to the worst possible imagined scenario.

Those managing OCD have “high SUDs” days and moments and low ones. High levels of distress, however, can cause people to drop out of school, have breakups, leave or be fired from work, and/or be shut in their houses. OCD can be incredibly debilitating.

If anyone reading feels like they might experience this (or know someone who does), treatment can help anyone, no matter the level of disorder, and there is effective treatment out there!

Understanding rreatment

After 20 years, finally getting a diagnosis and treatment was a real relief, but there is more I wish I knew then as well!

OCD Cycle

Deep in the pain of OCD, it is hard to understand what is happening and therefore what to do about it. The OCD cycle starts with some sort of intrusive thought, image, or feeling, which then brings up distress and/or anxiety. Compulsions are used to lessen the distress, which, as mentioned previously, do work. Still, they only provide temporary relief and reinforce that the intrusion is bad and should be avoided or challenged more. This leads to more intrusive thoughts, and the cycle continues.

In order to break out of the cycle, therapists use Exposure and Response Prevention (ERP) therapy, which is considered the “gold standard ⁴ of treatment.

ERP

Sometimes stylized ExRP, or called “exposure work,” the practice needs the two parts of exposure and response prevention.

Exposure means practicing being in a distressing situation (starting with low SUDs and working up higher).

Response prevention means to prevent the usual response. If the usual response is to do a compulsion of fixing, solving, cleaning, etc., the therapy is to not do that thing. Or if the usual response is to avoid the distressing situation, the therapy is to do the thing.

Understanding sneaky compulsions

White-knuckling

Through my early therapy sessions, I tried to do the ERP homework, but I found myself thinking, Come on, just get through this, and then you’ll be ok. Just a little longer, and then it will be over. What I didn’t realize at the time is that I was continuing to reinforce the OCD cycle. The more I told my brain that the experience was awful, the more it believed it.

I learned this is called “white knuckling” (the idea that you are holding on to something so tight that your hands start to lose blood and turn white). It essentially is replacing the usual compulsion with a mental compulsion.

Mental compulsions

When I first got into treatment and started reading everything online, I heard about something called “Pure O.” It was described as having purely obsessional thoughts, without any compulsions. What the understanding is now is that the ruminating has switched from intrusive thoughts to mental compulsions. These can be repeating words, counting, reviewing, problem solving, giving yourself reassurance, etc.⁵

I had made great progress with my physical compulsions and wondered why I still was feeling anxiety and distress until I realized how many mental compulsions I was doing constantly.

Avoidance

As I learned more about OCD, I saw compulsions as physical actions—hand washing, turning lights on and off, adjusting clothes, arranging things, etc. It was much harder to notice the things I wasn’t doing. I had slowly crafted my life to avoid the things that bothered me—to the extent that I didn’t realize I was actively avoiding things. I stayed out of the kitchen to not be around sharp knives. I skipped parties or left early to keep from uncomfortable social situations. I curated my wardrobe, so I never needed to wear something distressing.

Actively doing something to provide temporary relief is a compulsion, but so is actively choosing to not do something. Realizing this was a big step in my recovery.

Takeaways

Obsessive Compulsive Disorder is not just about being clean and neat. It is a complex and often debilitating disorder that affects millions of people. Thankfully, treatment and recovery are possible, particularly when noticing and managing tricky compulsions and nuanced treatment. For those suffering, it is best to do recovery with a trained therapist. If you know someone in your life who is affected, learning more about the disorder can be a great way to support them.

For English-speaking readers, check out the International OCD Foundation, OCD Action, and OCD-UK in the UK, and OCD WA in Australia.