We Are Here

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A couple of years ago, our family thought we had kicked OCD to the curb. Our son was doing great and he could look those OCD thoughts and fears in the face and tell them where to go. A lot of times, he barely even noticed them. My husband joked with him that they were going to revoke his OCD Club membership.

Enter – PUBERTY.

The first thing that we noticed was that his fear of touching plants was back. My son used to be afraid of touching nature. It was dirty. It might contaminate the whole house. He had tackled that one long ago through countless exposures in cognitive behavior therapy (CBT). You would hardly believe what the kid had been able to touch – what we all touched as we went through therapy with him. Now, 4 years later, he ducked under low-hanging branches and side-stepped shrubs. He had to run to wash whatever had made contact with the offending plant. That meant sometimes his hair went under the faucet while we were out at the mall or his shirt sleeve was soaking wet and soapy at the amusement park.

He called his OCD therapist for tips and encouragement. They developed a plan for how he would beat OCD this time around. But he never followed through.

“It’s too hard,” he’d tell me. “I’ll fight it when I want to. It’s not that big a deal.”

We reminded him that, hard as it is to fight OCD, it gets tougher the more you give in to it. He pushed back against us. He wanted to do it his way. We wanted to support him. So we backed off – and, as it happens with OCD, the disorder found new ways to creep into his life.

That is when scrupulosity entered our family life.  Scrupulosity – I’d never heard of it before I started learning about OCD.  I can tell you this though, knowing what it is and living with it – those are two entirely different things.

The International OCD Foundation (IOCDF) defines scrupulosity this way:

A form of Obsessive Compulsive Disorder (OCD) involving religious or moral obsessions. Scrupulous individuals are overly concerned that something they thought or did might be a sin or other violation of religious or moral doctrine.”

Okay, but what does that look like?  In our son’s case, he started to worry about being the perfectly best gentleman he could.  You might wonder, “What’s wrong with that? It’s good for a teen to be respectful and helpful.”  And I probably sound ungrateful.  Believe me, it tore at my mom-sense explaining to people that my son was too polite and too helpful.

Imagine this:  You are on an airplane with 200 plus other people.  Someone sneezes.  Your companion says, “Bless you,” to them.  They sneeze again.  He says it again.  That sneezing person is sitting ten rows ahead of you and never heard the “Bless you.”  Fifty people on the plane are sneezing.  Your companion says, “Bless you,” every time any one of them sneezes -even if you’re in the middle of a conversation with him.  That’s a true story.  It was a 5 hour plane flight.

We’d go to dinner as a family.  He’d say, “Thank you,” to the server for his glass of water…and for my water, and my husband’s water, and his brother’s water, and the water he brought to the table next to us.  He said, “Thank you,” to everything the server did for anyone within his eyesight for the entire meal.  The poor guy couldn’t rest.  He had to be constantly vigilant – and we couldn’t have a dinner conversation.  When it finally came time to leave, he could not exit until he had pushed in everyone’s chair at our table – perfectly straight.  And then he had to fix the chairs at every single table he passed on the way out.  He couldn’t leave a mess for the servers.  We were ready to pick him up and carry him out of the restaurant.

It also took hold of religious practice.  Prayers had to be said perfectly.  If they weren’t or if he wasn’t sure if they were, he had to begin again.  A 5 minute prayer could take 20 minutes.  He was seized by fear that something bad might happen if he didn’t get it just right.

My husband and I told him that despite his wanting to do this on his own, as parents we had to step in and get him back into regular treatment for the OCD.  He balked.  He was angry.  It was our problem. He could do this.  He didn’t want any help.  And this is how he entered treatment.

After some initial resistance, he decided to prove to everyone that he could do it.  Mostly, he wanted to get out of treatment – and getting better seemed the only way out.  And he made lots of progress.  But then, he started to resist more strongly than ever.  He insisted that it was everyone else’s problem and that he could fight his OCD when he wanted to – on his own terms.

The treatment team held case conferences.  They brought in religious leaders to talk with him. They tried to incentivize him for doing the work.  Ultimately, he didn’t want to do the work.

My take on it is this:  He’s a teenager.  He wants to be independent.  He wants to separate from Mom and Dad.  Mom and Dad want him to get healthy.  He asserts his independence by showing us that we can’t force him to participate in treatment.

His therapists, my husband and I ultimately agreed that continuing to bring him to treatment when he doesn’t want it is counter-productive.  If he’s going to get better, it is going to have to come with a decision on his part to do so.  Sadly, we laid it out for him:

You say you don’t want to be in treatment.  You say you want to do it on your own. We are giving you what you asked for.  You can always return to treatment, but for now, we are done.  Our family will leave you alone.  We will  not point out your symptoms.  We will not give you suggestions on how to handle your rituals.  And we will not participate in them either.  If you want our help to resist OCD, please ask.  We love you.

And so…we are here.  He is not in treatment.  We have backed off.  The rituals are still here, but we are finding a way to live as peacefully as we can and not to make OCD the center of our lives.  As a family, we hold out hope that the day will come when he will want to fight OCD more than he wants to fight us.  He has the tools. He knows what to do.  The journey continues….

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