I would like to share a little about my OCD and treatment, and what I have learned (and even taught my own therapist!) about ERP (exposure and response prevention therapy), in hopes it is helpful to someone. I originally wrote this for an OCD forum, so I apologize if it is confusing. But I think that everyone with anxiety issues may find this interesting so I thought to share it here, with some minor edits.
I could write at least a book on my struggles with mental illness, as well as drug addiction, but I will keep this as brief as possible.
My OCD started about 8 years ago. For 10 years I took a cocktail of drugs that were prescribed to help my drug addiction (which included Heroin — now clean 9 years), that ironically made my drug addiction inescapable — I continued to abuse drugs for as long as I took these prescription medications (which included Suboxone). I finally got off all these drugs, and this is a very long story. But to summarize the most relevant part, I was prescribed Klonopin, a benzodiazepine, and at the very end was prescribed what could have very well been a criminal dosage -- at least 3 times the maximum recommended daily dosage. Getting off of that (after 10 years of above-normal dose usage that was frequently abused) can be described as no exaggeration, hell. It was like OCD, and in fact severe "Pure O" OCD was a defining feature of it. “Pure O” OCD is a type of OCD that originally was thought to have no outward compulsions, but is now understood to indeed have both obsessions and compulsions, but they are frequently internal and not visible. This first obsession I developed was the possibility I had AIDS, despite having been tested for HIV, to the point I was so debilitated I could not get off the couch, nor even focus on TV while on the couch. This was something brand new I have never experienced before and was as far as I could tell a withdrawal symptom. But there was so much more. I think at one point while trying to come off cold-turkey I could literally feel my brain melting out my ears. If you are curious, there is a good Wikipedia page on the benzodiazepine withdrawal syndrome.
And this wasn't something that lasted weeks. I kid you not it lasted years. And in some ways, it is still not completely gone. Though, at this point I can say I am in a better state than I was before trying to get off, and that's what really matters. In fact, I am for the first time truly in my life, happy.
The thing about withdrawal was that it felt just like anxiety -- it felt like a panic attack — one that did not ever end. So, I developed PTSD, and this was unfortunately triggered by simple feelings of anxiety. Just writing this is making me feel a skin pricking sensation that was reminiscent of my withdrawal.
So while many withdrawal issues faded, in a non linear on and off fashion that only exasperated the torture, the OCD did not. It is a long story but the HIV obsession faded, and was replaced with others -- many others. My acute withdrawal was over but I had developed bona fide OCD.
It took a very long time and a CBT therapist to understand that it was in fact OCD. I knew it only as withdrawal. And the first therapist I went to (that I only went to for a few months many years ago) did not get it and just called it GAD — generalized anxiety disorder — it is frequently missed by improperly trained clinicians. But eventually I did go and get help again. And I am so glad I did. I don't know where I would be right now if I haven't, but I was in a very very dark place. I also have had issues with depression, and the two disorders can feed off each other. And it was a perfect time to seek help, because whatever my therapist suggested I do could not be any worse than what was currently going on in my head -- and guess what -- it wasn't.
"Pure" O is a misnomer. Not only were the compulsions mental, but they were outward too: I checked things. This was, more or less, my sole compulsion. But, unlike what I read about OCD compulsions bringing temporary relief, checking only caused the anxiety to spike up and up and up. But I felt compelled to do it anyway. To give an example, I would have an obsession that I left the door open and my pets would get out (and die, in a whole anxious fantasy I had). So I would check the door. Ok its closed. Walk away... now I feel unsure. I should go back and check it again. This time I need to jiggle the handle. Hmm.. ok. Walk away... nope, that doubt comes back. What if? What if I just jarred it open? What if I am remembering wrong? It just doesn't FEEL right, even though logically I knew of course the door was closed, it FELT open. It was a horrible duality. So after a couple more rounds of checking the door, I have now nurtured the obsession to the point I am staring at a closed door and still overwhelmed with anxious doubt that it is open (even though my logical mind understands of course the door is closed). This is what OCD is like. It is both an overwhelming need for, coupled with an inability to find, absolute certainty.
And here is the "Pure O" trick - I finally am forced to leave the house. That's an exposure, right? No it isn't, not for me. The checking just goes up into my head. Now I am -- frantically -- mentally checking instead of physically checking. That was not exposure and response prevention -- it was exposure and response indulgence. Which did the opposite of help. In order for an exposure to be effective in OCD, the compulsion needs to be stopped (“response prevention”), because the compulsion is what is reinforcing the fear.
As you can imagine (or perhaps have experienced), stopping thoughts you are frantically fearfully having is near impossible. I used mindfulness to try and draw myself out. Redirect my focus to the present moment. Observe the nature around me, the act I was engaging in. This was somewhat successful, but not completely. What worked better for me as ERP, was to do imaginal exposures. Write stories of my worst fears coming true. And read them and force myself to go through the imagined experience. I was unable to check that it wasn't true, in such a situation. And this was better. Even better than that was to read these exposures to my therapist. Admit my obsessions and feel all the shame I am imagining I would feel. Also, record myself and listen to them. This helped too. I also would tell myself, yes its all true. Maybe all my fears will come true, I will just have to live with that. But OCD isn't thoughts -- it is feelings -- and this can cross a fine line into become an obsessional debate in my head that engages my compulsions.
It wasn't until recently, when I engaged in a real life in vivo exposure doing something I had to do that I was terrified of, that I had an epiphany. Remember that PTSD I mentioned? Well, I still had it. And I think what I was largely afraid of was not what I would imagine would happen. It was how I would FEEL during it happening. I was afraid of the anxiety I would feel -- and that it would be reminiscent of withdrawal -- never ending. Let me tell you, OCD lies. In fact, I can tell you even if my obsessions all came true, I doubt it would feel as bad as it did in an OCD obsession loop — people without OCD cannot imagine how horrible it feels. Obsessing keeps the fear alive, and amplifies it, and mutates it into an entirely fantastical scenario that is not the way real life works. In a real life situation, your anxiety does not stay high, whether your fear came true or not. Once the threat is gone, your fear diminishes -- it serves no purpose. And this is part of the theory of exposures, that we learn that when anxiety goes up it will naturally come back down by itself. Either through learning by experience that our fears don't come true the way we are envisioning, or more typically though fear extinction learning that our fears don't come true at all. Your brain has mechanisms to stop runaway anxiety that we are subverting with our compulsions.
So I think I finally learned how to quiet my compulsive mind. It is not through distraction. It is not through relaxation, or cognition. It is quite literally by engaging my anxiety. And I am not talking about my thoughts. As I said I already did that -- with marginal effectiveness. OCD isn't thoughts, it is feelings. I am talking about focusing, intentionally, on that feeling of anxiety. I don't know really how the describe it, that burning feeling in your chest, all the physical and metaphysical sensations. Mindfully focus on it, non judgementally using all those skills I practiced, and instead of fighting it, say, go ahead -- bring it on. It is just anxiety. It can't hurt me. In fact, if I am not afraid of it, and aware of what it is, it almost feels kind of good. And if I don't fight it, it will go away -- not just eventually either -- rapidly. And doing this quiets my mind. Stops the compulsive thought loop.
Yesterday I had my last appointment with my therapist as an OCD patient. I can't say it is all gone forever. That's just not my experience. But life is worth living. And even sometimes, filled with joy. And if I take a (justifiable and normal) risk, do an exposure, even though I am scared -- it feels fantastically empowering. I would never want to live any other way again.
That's enough for one diary. I hope this is helpful to someone!