As I attended the Annual IOCDF Convention last week, I met with several parents who where at a loss as to how they were supposed to communicate with theirAug 3, 2012 1 of 1View SourceAs I attended the Annual IOCDF Convention last week, I met with several parents who where at a loss as to how they were supposed to communicate with their children afflicted with OCD who were either refusing therapy or were unable to speak to them directly about their OCD issues & its effects on their families.
Perhaps, the following letter can serve as a template for others facing similar plights.
Before LOCDF, my 13 year old daughter was controlled, commanded, confined & condemned by her OCD. She could not even breathe my air, even-less, speak of her debilitating OCD. As no treatment had ever reduced her OCD's severity-often increasing it through poor medical practices- and insurance had denied the only OCD in-patient residential ERP program, I had to devise a new plan to fight her OCD. I decided to begin writing her letters & requiring responses within defined periods of time. Since the entire household was run by OCD, there were infinite small, yet major, enabling tactics which could be removed if she did not comply. However, since she couldn't touch/ breath anything I'd touched I began emailing her from my bedroom to hers, across the hall.
1st email letter:
My Dearest "Julia,"
We are going to do things differently. We are going to communicate. I am not going to allow you to give up on yourself. You are a courageous, smart, loving, wonderful person who has a big problem but a problem, believe it or not, which has solutions. You must be willing to, at least, try. I know you donât feel courageous but courage is not the lack of fear but how you react and cope with the fear.
I know how impossibly difficult it is to discuss your OCD, so I want to correspond with you via email until we are able to have a personal, face to face, dialogue. I am only trying to help you the best I know how. I have extensively researched, spoken to experts and corresponded with countess others suffering from OCD. From all this information, Iâve learned a lot and have come to some conclusions.
I realize you feel helpless against your OCD, the intrusive thoughts and need to act upon them. This I, now, more fully understand. You must try to understand, too, that I donât see things through the eyes of OCD, so I upset you unintentionally.
Iâd like to begin with what I have learned about the brain and OCD. It is not your fault you have OCD. You, and all OCD sufferers, brain chemistry and structures are different than people without OCD. Put in simple terms, 2 parts of the brain are bound together where there should be space in between. Your brain sends a signal and it gets stuck or locked and canât be further processed. Then that thought gets amplified over and over in non logical ways. Since it's stuck or locked, the only way to make it better is to re-wire the connections in your brain going 'around the locked portion' allowing normal thought processing. I can show you pictures of brain scans proving this fact.
Just so your clear: obsessions are thoughts, compulsions are the actions you take relating to the thoughts and rituals are the things you do over & over compulsively.
Remember when your sister, Carmela, could not speak because the speech part of her brain was damaged? The only way for her to be able to speak was to re-wire the connections around that part of her brain. The same is similar for you. You have to re-wire those connections so that the thoughts and actions will no longer be âlocked.â As you know, the only scientifically validated treatment to rewire is properly guided, exposure therapy.
One person described OCD to me as, âI compare OCD to a spider spinning a web at warp speed. The center of the web is the triggering event. Every intersection of the web is another possibility OCD creates in my mind, and it can grow infinitely. Feeding the spider by acting out the compulsions only makes her spin faster, until the web is so large, the spinning so out of control, the situation so infinite and sticky that all I can do is collapse in a sobbing heap of submission. How do you stop when you get to that point? How do you know whatâs real and what isnât? I want to stop being afraid. But Iâve always been afraid, though the crippling nature of contamination fear is new to me. This is not the first time OCD has prevented me from enjoying life, but it is the most severe. It is hell. I just want my life back more than anything in the world.â
She also says, âI fââ"ing hate this disorder. It takes everythingâ¦ I deeply resent the fact that I have to struggle painfully with shit that is completely normal for everyone else.â Doesn't that sound like you feel?
That is all for now. I am going to email you often and I expect some response each time within 24 hours. I adore you and want only what is best for you. Sometimes, I may say things you donât want to hear as you may to me. The point is to communicate. Since your not in any kind of therapy program, we must create our own. This is non negotiable. It will be difficult at times, and I will be here for you every step of the way.
I will listen and respect you at all times. There will be things I am going to require, things for which you may not agree but they will be required, none the less. If we work as a team it will be much better than if we donât. You must remember, though, I am the mother and you are the daughter. I need you to trust me. And, things in our lives will improve.
Your loving mother,