OCD Recovery Avoidance

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?

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About LISA DOUGLAS

Foremost, I am an OCD awareness, treatment and long-term recovery: advocate, spokesperson, consultant, supporter, and educator. I am the mother and sole provider of care for an amazingly smart, witty, charismatic, 13 year old daughter, Alexandra, who was severely debilitated by OCD. The apex of Alexandra’s journey to simply be like ‘normal’ people is marked by her recent, astonishing ascent from the subterranean bowels of OCD Hell she has inhabited for as long as she can remember, to becoming freed to, once again, walk alongside and among the “land of the living.” Over these past nine years and all the realizations I’ve made regarding the mental health system, its profession and providers, society’s stigmas, discrimination, accusations, insurance debacles and all else involved, I’ve been making belief, someone, someday will help my progressively declining child who’s Y-BOCS consistently remained between 34 and 40 for the past 6 whole years! Until this past April, she and I have been on an endless quest for proper treatment which would help to alleviate and, ultimately, release her from the incomprehensibly horrific, all-consuming, self-harming, isolated purgatory from which she was ever-increasingly, perpetually trapped by her obsessions and rituals. Earlier this year, our seemingly last hope for help was to be an extended stay at Rogers Memorial but after months of fighting with her 2 insurance companies over denying coverage for admittance, I was at my wits end, again! Having immersed myself into the global OCD community for many years seeking help, advice, guidance, etc., I came across a post seeking beta study participants using an app for ERP. Immediately, I applied for my daughter. The director/doctor was very hesitant as Alex’s OCD was so extreme. However, with a lot of persuasion, a remarkably wise and kind doctor, as well as, an enormous ‘leap of faith,’ we began using the app from LiveOCDFree. She has been diligently working with the Live OCD Free app for the past 3 months. During this short time, with much hard work and determination, she has achieved remarkable progress against her, previously omnipresent, OCD symptoms! Her OCD had forced her into seclusion, isolation, and painful 4+ hour ritualistic decontamination showers and had even left her unable to touch or breathe the air of those she loves. Remarkably, Alexandra can now walk anywhere and touch almost everything freely. She can hug and spend time with loved-ones and friends without decontaminating. Ali’s showers are now only 25-minutes and do not involve any painful rituals. She continues to work to conquer her remaining OCD issues and anticipates, in time, a full recovery from the OCD which has plagued her since the age of four. Alexandra, and I, want nothing more than to lead a revolution against this insidious, debilitating monster we call OCD! To help others see how much hope there is with proper treatment, she and I are documenting her OCD recovery process and history through Facebook.com/ LiveOCDFree, Twitter: LiveOCDFree, YouTube.com/LiveOCDFree, OCDKids.wordpress.com and LiveOCDFree.com. Please, join and /or follow her journey so you can be aware of OCD, too. View all posts by LISA DOUGLAS

7 responses to “OCD Recovery Avoidance

  • Laura

    I am speechless! My daughter just turned 10. Your words could have been my own!!! I am on the brink of tears — these kids suffer so!!! And I always tell her she is the bravest person I know! She also has PANS. I am grateful for your blog and will be checking in. I am sad, exhausted and sometimes overwhelmingly devastated but I am her biggest advocate and must keep trying to get her help. The doctor shuffle….makes me want to grab em by the shoulders and shake em and have them live in her shoes for just 24a hours!!

  • LISA DOUGLAS

    Oh Laura, I’m so thrilled you found this post. It’s ironic as you say my words could be your words and your words “makes me want to grab em by the shoulders and shake em and have them live in her shoes for just 24 hours,” are my words! I have not been updating this blog as things are very busy here. I am extensively entrenched in the ‘OCD world.’ I’ve gone from victim to advocate to support provider to activist. I believe I can help you, right now. You and I must speak about your daughter. OCD, like Smallpox, must be eradicated. OCD is simply unnecessary as it is treatable. The problems lie, as you know, in many areas thereby dis-allowing proper treatment and recovery. As it stands currently, putting all the right components together for the sufferer and their families is nothing short of an insurmountable task. I must, with dedicated others, change this unacceptable standard. It’s nothing short of criminal. My daughter lost her childhood (4-12) due to these many contributing, indefensible, factors. I am diligently working with others and on my own on several projects addressing these very issues which clearly exist to force change upon the “system” which is very broken. Broken such that lives are forever ruined for suffers and their loved ones, alike. I can be reached at 919-878-9086. If you Skype, I am LisaDouglas000.
    Most Sincerely, Lisa Douglas

    • Laura

      Lisa I will definatley contact you!!! I have 3 other little ones so I will have to time it so I can have a quiet moment to her chat! I feel at wits end but your blog did truly help me feel like our family is not alone! Thank you! Laura

  • LISA DOUGLAS

    I will be in all day, on the computer. We can do short chats as time permits if that will help.Not only are you not alone, your daughter and your family are going to be alright. We have to get you in contact with the right people and get her and your family into the recovery process. I will do all I can to help.
    Lisa

    • Laura

      Sounds wonderful!!
      I am at work today (I am an RN:) so I will not be able to call at all today 😦 Just a VERY BRIEF history of doctors and treatments (as we all know nothing about this is brief)!
      *Psychologist 12/2011 Severe OCD and Tourette’s vs Transient Tic disorder plus 10 new psychiatric diagnoses at once 😦
      *IVIg 2/16/12 & 2/17/12 With Dr K as DD became almost completely nonfunctional and homebound
      *Psychiatrist (prescribed Abilify – did not start; Prozac – did not help)
      *Neurologist – at Children’s hospital here, offered ZERO help
      *Cardiologist for Postural Tachycardia – said must be immune related but offered ZERO help (2 ED visits for tachycardia at children’s hospital here~~1st Dr AMAZING, 2nd Dr a capital B*%*@!!!)
      *NEW Psychiatrist – (Zoloft – made her feel worse so stopped; Celexa – just started yesterday…)
      *ENT removed tonsils and adenoids; he was wonderful and understanding
      *Consult with Dr T, finding out more about her immune system/infection
      *Pediatrician – does pretty good but by NO means takes charge so therefore I am still trying to find help for her without professional guidance (although Dr T is very helpful and kind he is 1000 miles away and all $$$ out-of-pocket…)

      She fights all day long at school (as you know) to keep from reaching PANIC level anxiety.

      I LOVE your view on “enabling”…read it to my husband…so true! My god she suffers SO if just talking to her about her fear every now and then keeps her from isolating herself and falling off her “cliff”…I have to help!
      RA was a new concept to me but makes total sense! My DD feels like no one will ever be able to help her. And without going in to much detail, looking back, we know she has been suffering much longer than “documented”…

      We have a few people around us that TOTALLY “get it” and get how sick and sad she is…others still tend to just smile at her and say OH your fine! Just take some deep breaths and relax.. HA HA IF WERE ONLY THAT EASY!!!!

      Can’t wait to chat!! And excited for your help and input!!
      Thanks, L

  • LISA DOUGLAS

    Is there anyway you can call me today? I have some initial questions which will help me get you to where and to whom you need.
    FYI:
    ****Research: MANY PANDAS/PANS CHILDREN SHOW ‘EXTREME’ SENSITIVITY TO SSRI’S!
    Alexandra (AKA-Julia before she decided to go ‘public’ w/ her story) was on the several SSRI’s, doctor’s with full knowledge of her history of PANDAS, at the highest dosages allowed. She, as a result, suffered even more terribly than she was already suffering. In addition, the SSRI’s made her Tourette tic’s much worse. Her tic’s were so horrifically damaging both physically, psychologically and emotionally. Her tic’s involved both vocal and physical aspects. She has since been able to control such that there are no vocal aspects, anymore but still has the physical ones at a much less severe level. However, she was in more ER’s than I can count due to the tic severity which I now understand was due to the SSRI’s. She would literally flop as a fish out of water with a tightening of her muscles such that she would dislocate joints and there were many periods where she and I would be forced to lie in bed and I put my body over hers as a means to help ‘absorb’ or ‘deflect’ the enormous force which was exerted, as well as, protecting her from becoming otherwise injured. These ‘event’s’ often times would last for 4+ days/nights! Living Hell is the only was to describe how horrific those YEARS were.
    I only learned of this SSRI sensitivity in PANDAS kids, recently. If only I had known. If only a single one of the plethora of Dr.’s and ‘expert’ specialist’s had listened, cared or done their due diligence. Alex now has chronic joint problems.
    Also, Alex exhibited what’s called A-typical strep presentations. She never had a red throat. She had strep rashes and all accompanying symptoms of Strep infection. She was, for years, never even tested for strep. I was always told she had viral infections and sent home.
    Something else I’ve since learned about Strep: Strep can ‘hide’ in joints! It can cause damage to joints.

    PANDAS is now PANS because Strep has been found to not always be the culprit. So far the list also includes (included in my recent wordpress blog about IOCDF PANDAS PSA) Mycoplasma, Mono, H1N1 and Lyme. Alex also had Mono and Lyme (including a PERFECT, classic, bulls-eye rash on her thigh) between ages 7-8. Although, she already had PANDAS, one may ask what addition contribution did these illnesses have on the resulting extreme OCD?

    Do you know of the Y-BOCS, Yale Brown Obsession and Compulsion Scale? We need to start tracking her scores giving a base from which to work. Alex’s were consistently between 34-40 for 6 of the 9 years. The scale goes from 0-40.Zero means no OCD and forty means as severe as it gets.

    Have you seen Alex’s 1st recovery video? It’s very encouraging. You may find it to provide you and your husband a moment to breathe knowing it will, with a lot of really hard work and the right support, be OK.. We’ll all get her through to the other side. Alex has far to go, but I can finally, actually, see the light at the end and it is the most miraculously, breathtakingly, beautiful light a parent will ever witness. Of this, I am sure!

    Call when able.
    Lisa

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