I once dreamed of a kind of eating disorder recovery that would allow me to finally be able to sit at peace with myself — to be content, even. Free at last, I’d imagine saying to myself. But seventeen years into my eating disorder recovery, I’d still not experienced such a vision. That is, until I discovered that undiagnosed Pure O (obsessive compulsive disorder) was sabotaging my recovery.

Eating Disorder Recovery & OCD

To the outsider, my recovery from an eating disorder looked like what is called a “full recovery.” Since there’s no textbook definition of full recovery from an eating disorder, here’s mine: I no longer starved, binged, purged, or allowed the fact that my hips stuck out from the rest of my body to dictate my every waking hour. I became a mental health recovery advocate, and I even wrote a book about eating disorder recovery — and it went into a second edition, too. Yes, a pat on my back for that one. 

And a metaphorical thump on the back immediately afterward, too, which is what my mind would always demand that I give myself for feeling like I’ve just bragged about something. In my mind, my bragging somehow turns into me doing something wrong, and confirms that I’m a bad person. And because I’ve done something so wrong, and am so bad, my work fires me (again, in my mind). That thought turns into imagining going homeless, my kids hating me for the life I have taken away from them — and so the rumination went on and on. You see, I have both recovered from an eating disorder and, until a year ago, had been living with an undiagnosed form of obsessive compulsive disorder. This is no surprise, really, when considering the fact that it typically takes between 14-17 years for an individual with OCD symptoms to be diagnosed.

You see, I have both recovered from an eating disorder and, until a year ago, had been living with a form of Obsessive-Compulsive Disorder.

If you’re anything like me, some of you may even be thinking, You said that you’re a mental health advocate, so how could you not know? I’m with you. I’ve analyzed that question for a very long time, along with processing the grief that I experienced because I’d wished I had found out what was happening to me sooner. The thing is, though, I did know that something was going on with me. I thought about it every time the revving anxiety motor crescendoed into panic attacks and resulted in relentless and scary intrusive thoughts. 

It’s not like I never spoke about it, I did. I asked for help from professionals many times — like many, many times. Despite my shame and fear about what my thoughts would say about me, I still did everything that I advocated for others struggling to do, too: Ask for help, advocate for yourself, and use your voice. 

Getting a Diagnosis for ‘Pure O’

Over and over again, I was misdiagnosed with generalized anxiety disorder, and was always sent home with an action plan — which gave me some relief until, due to my chronic ruminating and looking for absolute certainty in all parts of my life, I’d once again awake to the revving of the motor within. The anxiety would vroom, vroom, vroom itself into panic attacks that led to the scariest thoughts I’d ever had in my life. And the thoughts would send more and more waves of panic. I once believed such thoughts defined who I was as a person — bad, broken, and unfixable. I tried hard to push these violent and scrupulous thoughts away, and because of it, they got even worse.  

The anxiety would vroom, vroom, vroom itself into panic attacks that led to the scariest thoughts I’d ever had in my life. And the thoughts would send more and more waves of panic. 

I never considered that I’d ever had OCD, because like others, I’d understood it only for its symptoms of obsessive handwashing, flicking a light on and off, repetitive counting, or an obsession with avoiding germs and contamination. Stuff like that. I didn’t have any of those symptoms, and I also didn’t know that OCD is one illness, but it comes in many different, debilitating forms, such as primarily obsessional obsessive compulsive disorder (nicknamed Pure O,) which shows itself in the form of scary, unwanted, “intrusive thoughts,” and mental rituals and compulsions that are invisible to the eye — all of which I absolutely did have.

For myself and others with Pure O, these intrusive thoughts tend to come in themes (although they are not limited to one,) that the obsessions and mental compulsions revolve around, including but not limited to relationships, sexual orientation, pedophilia, harm, religious and moral scrupulosity, among others. Sixteen years into my eating disorder recovery, I was diagnosed with Harm and Scrupulous themed OCD. And it turns out that I’m not alone. At least “53 percent of individuals with [an] eating disorder will have an anxiety disorder,” and at least 18 percent of those who struggle with eating disorders will also be diagnosed with OCD.  

Sixteen years into my eating disorder recovery, I was diagnosed with Harm OCD. And it turns out that I’m not alone.

It wasn’t until four months into a family bus trip around the country to advocate for ending the stigma surrounding mental health and addiction that I found myself curled up inside the bus in a fetal position, petrified by the thoughts racing through my head, while the other members of my family, outside of the bus, were enjoying the beauty that surrounded them. Desperate to find relief, even if it confirmed my worse beliefs about myself — what if I’m capable of murder? what if I’m a sociopath? — I looked up my symptoms online and stumbled across the words “Pure O,” which changed my life — and my recovery process — forever.

Why ‘Pure O’ Often Goes Undetected

People with Pure O experience mental compulsion that often cannot be seen, which makes the illness often difficult to detect. The mental compulsions such as, mentally performing special prayers, mental list-making, reassurance-seeking, reviewing one’s thoughts, and avoiding anything to do with the intrusive thoughts, are performed in an attempt to rid themselves of their unwanted obsessions. 

Unfortunately, over 50% of individuals with OCD are misdiagnosed with other mental health illnesses such as generalized anxiety disorder, ADHD, bipolar disorder, and sometimes even Schizophrenia. Some of these people suffering from Pure O will never seek treatment due to the taboo nature of the intrusive thoughts that they are experiencing, or fear of judgment.

How to Ask for Help

Although approximately 94% of the entire population has these thoughts at times, those with OCD are often crippled by the thoughts which come in the form of the antithesis of the values that they would otherwise hold. If you think that you may be struggling with a form of OCD, please understand that it has similar characteristics to that of an anxiety disorder, and is a highly treatable illness. 

When seeking help, don’t be afraid to interview your potential therapist before beginning treatment. Be sure that they have experience with treating OCD and anxiety disorders. It’s very important that the therapist who you choose can treat the rumination and mental compulsions. Exposure Response Prevention (ERP,) a form of Cognitive Behavioral Therapy (CBT), is the most successfully proven treatment for OCD, therefore, it is recommended that you ask your potential therapist if they have skills in this area. Please note that medication can also be effective in treating OCD. For more OCD resources, check out the: International OCD Foundation.

One year into my Pure O treatment with both ERP and Acceptance and Commitment Therapy (ACT,) my vision of recovery looks quite different from how it did before I started my eating disorder recovery. Sure, I still want to be able to sit at peace with myself and feel content, and I do experience this a lot of the time. But I don’t buy into the belief that one day I’ll be free at last. Not because I believe that I’ll forever struggle — I don’t always struggle, and I know I won’t always struggle in the future, either — but in fact, the thoughts are not as relentless and are few and far between these days because I now have the tools with which to dispel them. 

It’s just that today I understand that there’s always going to be uncertainty in life, and running away from it tends to make the feelings of being out-of-control much worse. Just like how my weight no longer defines me in my eating disorder recovery, the intrusive thoughts in Pure O recovery don’t define me, either. Because, you know, they’re just thoughts.

Writer’s Note: A special thank you to my friend and colleague, and OCD expert, Dr. Andrea Kulberg, for helping me with the accuracy of the OCD information within this article.