My daughter has had OCD since before turning 4. She is now 12.5 years old and I’m just now learning about this thing called RA, recovery avoidance. But how can this possibly be? Surely, it’s not for my lack of seeking help from countless doctors, neurologists, psychiatrists and psychotherapists. I personally dedicate my life to her recovery. I researched on, what I thought to be, comprehensive internet searches over these many years. From the age of 4, I began taking her to “experts” in the field of childhood mental disorders. Time and time again, she and I were carelessly dismissed. I was told repeatedly, “she is fine, there is nothing wrong with her.” But how could this be? Her obsessions and compulsions were profound! She had to say and do things which were nonsensical, sometime harmful, endlessly!

What took 7 years, until she was 11, was for me to realize that my child was masking all symptoms and denying they even existed to all the specialists as they carried on their “private sessions.” Even from such a young age, she was afraid, afraid to admit these issues plaguing our lives.

When she turned 11, after much persistence, she was accepted into a “prestigious” OCD Cognitive Behavioral Exposure Therapy program at Duke University in Durham, North Carolina. Every week we would drive the hour there and the hour back for her to participate in the treatment process. Finally, for the first time, she began to speak relatively freely to the doctor about the types of symptoms she experienced on an ongoing basis. Although she was willing to tell some of what she was and had endured, she was still holding back the severity of her illness. This too was to be her first opportunity to be professionally evaluated and have the proper tests administered to determine her OCD severity scales. Even with her guarded answers, when the results were soon revealed she was, none the less, still categorized as having severe OCD.

Hooray I thought, I have finally broken through the barriers of providing the source of treatment for my suffering child. I thought, now we will bravely be able to take on this next, difficult task of exposure therapy. There is at last hope, hope for my precious child. Week after week went on. Back and forth we drove but the more agitated she became. Her MD/PhD therapist explained, “she is not ready for exposures, I must first take time with her to prepare her for the upcoming tasks. They then began “talk therapy” or so I thought. As I patiently awaited her to complete each weekly session it became more and more apparent that she was getting worse not better. As I expressed my concerns to the doctor he appeared more frustrated than accommodating. After months of “treatment” with no improvement in sight he called me into his tiny office in the little gray room with cinder block walls to state, “she doesn’t want to get better,” she just isn’t ready” and worst of all, “she isn’t suffering enough yet to make her want to seek treatment.” He went on to say, “I will remain her doctor and prescribe her medications but further treatment is futile.”

My heart broke at that very moment. What does he mean she’s not suffering enough! How dare he make such a comment. She spends every waking moment consumed by the thoughts and rituals. There is never a break, never a rest from this dreadful disease. I wanted to scream, please, oh please, do your job and make her better. We left that day from Duke no closer to recovery that we had been since she was 4. Where was I to go, what was I to do? Again rejected, as though none of them, not a one has a clue.

Now, I’ve discovered RA (recovery avoidance). I now understand, that the experts agree, a certain percentage of OCD sufferers experience recovery avoidance. They simply refuse to take the necessary steps required to release themselves. Its thought that sufferers are either too afraid to do the tasks necessary due to their mortal fears associated with their OCD. Whether their fears are based in reality or not, the fear they experience is their true fear and high walls can be built to create a falsified illusion of comfort and safety in a vain attempt to protect themselves. Or, the other rational for RA is simply called Incentive Deficits. This is where the sufferer does not have enough incentive to allow treatment. We all thrive on incentives to drive our actions throughout life. Wouldn’t the knowledge that treatment will work be incentive enough to release this debilitating illness from ones own mind? I’m so happy to finally be able to give it a name. So at least now, I have two possibilities from which to choose to explain her seemingly inexplicable behavior.

I have since come to understand, or quasi understand my wonderful yet tormented child’s predicament. I believe she allows such suffering and pain to continue because of both factors. She fears treatment because she believes no human will ever be able to help her. She fears exposures as she is convinced crossing her imaginary lines will surely kill her or someone she loves. Most notably, however, I believe the most profound reason for her RA is that she knows nothing other than OCD! Having suffered since she was four years old, this is the only life she knows. She has no memories from which to rely. Memories of better days, happy thoughts from a better life are so far from her scope of reality that she continues to spiral further down the OCD drain.

What is the answer, is there someone to blame? Why was I never told of RA? Why did the doctor just turn her away? I am in a quagmire from which I see no end. Can anyone out there chime in?

1 Comment
  1. Douglas 10 years ago

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    I agree that her “Duke MD/PhD Pediatric OCD Specialist” saying treatment is futile is complete crap, as well. He went on to state, “she’s just not suffering enough to want to recover.” I thought I would fall out of my chair. In 6 months of weekly meetings he attempted one exposure. He brought in a shoe box of full of dirt from his yard and a Hershey’s Kiss. He had her rub her hands in the dirt, then rub the Kiss in the dirt and eat the kiss. Meanwhile, the dirt has red ants in it which, consequently, stung her. She wasn’t thrilled, to say the least. Within 2 sessions, he gave up on her and provided me no further treatment guidance.
    Here’s how I see the problem from my many experiences; if the therapist is trained on CBET, they develop myopic vision. Standard, by the book, protocols are followed ritualistically. There appears no room for deviation from person to person. This technique may be somewhat successful with adults but afflicted children are a unique species of their own who must be treated as individuals. If the therapist is not trained on CBET they will either choose to not take the case as this treatment has become the “standard of care” or they will agree to treat but evade the actual OCD issue completely acting more as a “family counselor.” I agree that an eclectic type of care need be provided, but how does on find such a person? Additionally, because of her negative experiences with both the aforementioned types of therapists, Julia has developed a complete disdain for the entire psychiatric community.
    You hit the nail on the head discussing the necessity for trust and understanding between patient and therapist. It is the relationship which will allow her to forge ahead towards, as you say, coming to different conclusions over time.
    The reason I use the term RA is because I just found out through my research that there is a label to put on the sufferers who can’t, for whatever reason, be participatory in their own recovery. I believe Julia is in this category. I think she is terrified of her OCD. She has never known anything different. She “knows” no one can help her. Yet, as she cries she states that this life she’s living is too unimaginably difficult, miserable and unbearable. She states, “I’m jealous of everyone who can just do things like normal people.” Your right, “she needs to go through a process where she is ready to face what she has to do.”
    In conclusion, I wish she would join the Tribe, but I don’t see it happening anytime soon.
    Thank you for your thought provoking comments. May I post your comments on my blog?
    Sincerely, Lisa

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