Bronwyn's OCD Story

When OCD showed up in my life as a teenager, it showed up in a big way.

ONSET

My mom had been dealing with a health concern, and there was the possibility that the health concern was going to end in my losing her to an early death. Thankfully, that scare did not turn out to be reality, and she was treated and declared healthy. But that experience was my OCD tipping point. Over the next several weeks, I began a journey with OCD that would last the next three decades of my life.

SYMPTOM PROGRESSION

The first sign of OCD for me was the compulsive need to leave notes for my mom each day. "If I don't write this note, something bad will happen to my mom." This went on for weeks. Each day, it was the same note. In the same place. At the same time. It makes sense looking back now that I had a trauma reaction happening. I had just dealt with a period of time where I truly thought my mom was going to die. I didn't want to repeat the potential of losing her. But OCD hijacked all of that into obsessional doubts as well.

Soon, I began worrying about contamination. "What if I get sick and die? My family will be sad. I will be causing them pain." "What if I get sick and then get my loved ones sick, and they die and leave me?"

This moved to checking behaviors. Doors especially. "What if the door isn't really locked and someone comes in and harms us? It would all be my fault." I lived in a cloud of guilt or attempting to avoid situations that could result in guilt. Everything came back to not wanting to risk a bad thing happening and it being MY fault. OCD had me terrified that I was going to accidentally do something that was going to cause harm to my loved ones.

Soon, I was tapping magical patterns to keep my loved ones safe. The skin on my hands was peeling off on my palms from the friction of twisting doorknobs over and over to make sure they were truly locked. Sometimes I would touch the doorknob, and it would be hot from the friction of my hands. I would wash my hands an untold number of times a day for far too long. My hands became red, cracked, and chapped. To this day, my skin holds the damage that OCD caused to it through excessive handwashing for 30 years. I had to do things "just right" or my body felt like it was going to explode. I developed many scrupulosity fears that resulted in neutralization compulsions and repetitive prayer. Sometimes OCD would build up so much anxiety in my body, that being IN my body was uncomfortable. I became really good at avoidance. I could turn getting people to open a door for me so I didn't have to touch it into an Olympic sport. I kept my hands in my sleeves for years. My contamination fears continued to be fear-based, but then also morphed into disgust-based OCD as well.

Many of my doubts came in image form - so I had to deal with imagined scenarios of my worst fears playing through my mind. It's like watching the scariest movie you can think of. I like to say that having OCD is like being the protagonist in an incredibly scary movie. OCD hands you the plans for how to save the world, and yet everyone around you thinks you are crazy for doing what "the boss" is claiming you absolutely need to do in order to avoid disaster.

My compulsions could last for significant periods of time - an OCD trick that I now know is called Double Jeopardy (I-CBT language): OCD convinces you that something is wrong and you need to do a compulsion, and then you do the compulsion only to get another doubt about doing the compulsion correctly. This particular OCD trick tortured me for 30 years, keeping me locked into physical and mental compulsions for long periods of time. I bet I've lost months of time of my life locked into Double Jeopardy.

Many people probably didn't know I was going through this hell every day. Some probably did and just thought I was strange. But all of the big moments of my life until just a couple of years ago had an uninvited guest along for the ride. Graduations, my wedding, birthday parties, hanging out with friends, enjoying family, interacting with animal loved ones, vacations - you name it, OCD was there. Imagine the happiest moments of your life and then insert your own personal horror movie into them. That is what living with OCD is like. You can be happy and seconds later be dealing with the threat of the world falling apart.

EARLY TREATMENT

Unlike most people with OCD, my mom recognized what I was dealing with almost right away and got me into treatment. Unfortunately and also like many people with OCD, that treatment wasn't effective for me. I did some talk therapy and also medication. I tried several medications over time and never responded to them.

When I was in college, I got to work with an amazing ERP therapist. She did it by the book. She called me to check on me and make sure I was doing homework between sessions. She was gentle and kind. ERP can be a life-saving treatment for people with OCD. I know it has worked wonders for many, many people. It was not the answer for me despite my willingness to do it and my attempts to make it a part of my life. It got me to get better at ritual prevention for a while. But my triggers still bugged me. The doubts always came. It was a persistent gnat that never quieted. Actually - more like hornets never quieting. I learned to delay doing my compulsions which did increase my quality of life, but ultimately, I did the compulsion. And sometimes, I still couldn't delay at all.

TRAUMA/PTSD

I treat people with OCD+PTSD for a reason. I've had several Criteria A traumatic events in my life and several rounds of PTSD. I believe that this complicated my OCD. I'm a firm believer that all OCD therapists need to be trauma specialists. The co-occurrence rates are high, and I sometimes wonder if someone had noticed PTSD in me, if I could have gotten better earlier. I also think that all PTSD specialists need to know about OCD and how to recognize and diagnose it. There are so many people who come to me telling me that no one recognized their OCD despite being in trauma treatment for years. So, to anyone out there reading this story who has OCD+PTSD, there are therapists out here who are trained to treat both. Not just trained - but SPECIALIZE in treating both. I'm trying to grow that number by offering training and consultation on OCD+PTSD. I'd also suggest those who are interested follow the work of Dr. Caitlin Pinciotti, Dr. Lauren Wadsworth, and Dr. Nathanial Van Kirk and others. They are searching for better treatment approaches for people like me who had a co-occurring presentation.

FINDING MY ANSWER

A few years ago, a man named Carl Robbins, LCPC found me in an online clinician group. He told me about a newer evidence-based practice for OCD called Inference-based CBT. At this point, I was almost 30 years into my OCD journey. I had very, very little hope that OCD was ever going to go away for me despite being an OCD specialist. I knew others could get past it and go on to have lives where OCD didn't harm them every day. But I had grown to accept that OCD was my burden to carry. It impacted so many areas of my life, but it was what I had known for so long. So, when Carl said, "Hey, there is this other treatment you can learn" I was skeptical, but due to my love of learning and wanting to have another tool for clients, I jumped in with two feet.

I don't remember the exact timeframe, but 3-4 months later, I was sub-clinical. Writing those words now still seems unbelievable. I-CBT gave me answers I needed to so many questions. Why do I get THESE particular doubts? What process is going on in my brain that makes me doubt in some areas of my life and not in others? Why don't all of the solid facts I know about germs and specific dangers apply in this situation with OCD?

For the first time in my life since developing OCD, I learned that a mind can be quiet and not send a million horror plot points into my thoughts to terrify me.

Now, a note of caution: this is MY story. For those reading who have OCD, I-CBT may not be the answer for you as it was for me. Just like ERP is the answer for many and wasn't for me. Or meds are game-changing for some people and not for others. But I write this story to tell you not to lose hope for a treatment option that may work for you. There are more treatments on the horizon. This is such an exciting time in OCD treatment. Metacognitive therapy, mindfulness-based CBT, and ACT all add elements to treatment as well. ERP Is a solid treatment. I-CBT felt like it was tailor made for my brain.

LIFE NOW

Post I-CBT, life looks like this for me now: My mind will occasionally flip into inferential confusion (obsessional reasoning) and spit out an obsessional doubt. But do you know what happens? Because I understand the process that OCD is using, and I know that it is not built on direct evidence in the Here and Now, I can just dismiss it. It takes seconds. No need for compulsions. It's like that old horror movie reel flashes the title on the screen of my mind, and I just switch it off. No need to go into it.

A note here about the people who brought I-CBT into my life. Co-founder Dr. Frederick Aardema who continues to be a mentor - I owe him and his co-founder Dr. Kieron O-Connor more than I will ever be able to repay. Dr. O'Connor died a few years ago, and I never got to meet him. But without him, I would be still be trapped in OCD. Carl Robbins and Mike Heady - two friends and colleagues who helped teach me I-CBT - without them, I'm not sure I-CBT would have gotten on my radar.

To those of you reading this who may be decades into OCD and feeling discouraged: keep searching for help. I never thought I'd be where I am now. Hopefully, there will be a treatment option for you that comes along or one out there already that you haven't tried.

If you are looking for an ERP provider - you can see a directory at IOCDF.org. If you are looking for I-CBT - you can see a provider directory here.

And for those of you who are also dealing with PTSD, please know there are many solid treatment options for PTSD as well. Prolonged Exposure, Cognitive Processing Therapy, EMDR, Trauma-focused CBT, Metacognitive Therapy and others are out there.

I hope you find the help you need.

Best,

Bronwyn