Sometimes in life, knowing what not to do is as important as deciding what to do.  That is, knowing what mistakes to avoid can help you attain your goal.  For those us who have OCD or who are trying to help our loved ones who have OCD, we need to avoid those things that either strengthen OCD or thwart treatment plans.

I made mistakes when dealing with Ray’s OCD.  We all do.  No one who has ever dealt with something as complicated and perverse as OCD will navigate through it perfectly and without turmoil.   There is no way to avoid mistakes but those of us who have gone through it can help prevent others from falling into the same traps we did.  Or, at the very least, minimize the damage that can happen when mistakes happen.

Before I really understood what was happening to Ray, I made one of the most common errors that occur when dealing with OCD.  I enabled it.  It is so easy to do and often times, we parents think that we are actually helping our kids deal with their OCD when we enable it. When we give in and do what the OCD says, we see how relieved our kids become.  It’s like we just gave them a shot of morphine for their excruciating pain.  Many times I opened a door for Ray because he refused to touch a doorknob thinking and fearing that it was contaminated.  Or, I would reassure him when called out that he was having yet another one of his “bad thoughts.”  My maternal instincts told me that it was my responsibility to lessen my child’s pain, and it was amazing how my enabling eased Ray’s pain.  But of course, that pain would come right back and soon we found that I needed to enable more and more just to achieve some small relief.  Ray had become addicted to my enabling much like an addict needs an ever-increasing amount of a drug.

I finally realized that to help Ray overcome his OCD I had to stop my enabling.  And, much like an addict going through withdrawal symptoms, Ray fought it very hard.  He would beg me to open doors for him, to wash yet another set of clothes he “knew” was contaminated, to reassure him that he was still a good person even though his thoughts remained twisted and perverse.  I knew that I had to stand my ground and not give in.  I told him, repeatedly, that I couldn’t listen and obey his OCD any more – that to do so, would only feed the beast even more.  He didn’t get it.  All he saw that I would no longer was providing him with this drug of choice and that he was still in pain.  He hated me for it.  I hated doing it.  I hated the OCD for putting us through this hell.  But, I stayed the course.

It was a painfully slow progress but in time, Ray’s OCD stopped growing and expanding into new areas.  We had yet to shrink it into something more manageable – that would take therapy, specifically, exposure and response prevention therapy (ERP).  But, by stopping my enabling, Ray’s OCD had lost its momentum and maybe, even one of its most important life-sources.

I believe that Ray’s OCD wouldn’t have grown into the grotesqueness it did had I been more away of how I was sustaining it via my enabling.   As hard as it is to admit, I helped Ray’s OCD overtake his life.  But, I also realized my mistake and with a lot of effort, time, and creativity, corrected it.

The relief I felt when Ray’s OCD started to wane was incredible.  It was like I had finally found the magic formula.  I had hope again and started to believe that Ray would be ok and that he would find his way in this world.  This all happened a short while after we had mastered how to use exposure and response prevention therapy (ERP) and had faithfully instilled it into our own therapy sessions.

What surprised me what how short lived that relief was.  I had expected that with Ray’s OCD quickly receding that happiness and confidence would soon return and stay.  We could finally be a normal, healthy and happy family because OCD was no longer a major force in our lives.  But, that didn’t happen.  Instead, we had to face an entirely new and unexpected problem:  the aftermath of OCD.  We had been so entwined with OCD that we had failed to realize that Ray wasn’t developing in some important areas.  All the time that he was held down by OCD his peers had been moving forward.  They had found friends and were enjoying a healthy social life; they were experimenting with new ideas;  they were actively planning their future careers. They were growing.  Ray couldn’t.  He was too busy just trying to avoid the land mines that OCD had placed in his path.

I have often thought that dealing with the aftermath of OCD was like dealing with the aftermath of a tornado.  When the tornado is bearing down on you, you grab what is important to you and run for the nearest shelter to wait it out.  Then, when it’s safe, you come out and see what’s left.  Initially, you are thankful to be alive and in once piece, but then realize that your house and much of what you have built has been destroyed by the tornado.  You even feel extreme jealously of your neighbors whose house was left intact.  Why was your life so severely affected when others are left to live as they always have?

I knew that we had no choice but to keep going forward and not to dwell too long on what OCD had done to us.  Ray was behind and the longer we waited to catch up, the harder it was going to be.  So, we started looking for ways to rebuild his life and to secure his future.  He took summer courses to boost his academic record and to improve his overall grade point average.  He added college level courses to his high school schedule.  He even wrote a book on his experience with OCD, partially because he knew his record was too sparse with regards to community service and extracurricular activities.  And, he started spending more time with peers to relearn how to communicate with kids his own age.

Ray is currently in his first year of college and is doing well.  There is no doubt that he has caught up to most of his peers and has even surpassed many of them.  He works hard and is focused whereas many of his fellow college students are simply drifting.  His future is bright and he no longer worries about his OCD.  He has rebuilt everything that OCD destroyed.

One question I have often wondered about is this: Why do those of us who suffer from mental conditions also have to deal with the stigma of having one?  So many times during Ray’s OCD we were faced with the worry about how others would perceive Ray if they knew.  Where else in the medical world does this happen?  You get cancer; do others turn away or do they show up at your door bearing casseroles and offers of help?  You get diabetes; do others commiserate with you or do they blame you for having the condition?

The few times we did mention Ray’s OCD, we regretted it almost immediately.  I could barely get the words, “Ray has obsessive compulsive disorder,” out before I was bombarded with statements like, “I know all about that, I have a touch of OCD myself, or Doesn’t everyone have a little OCD?”

Why people think they know so much about a complicated disorder like OCD has always confounded me.  And, of course, they also knew exactly what we needed to do about it.  Several times, I was told that Ray’s OCD would get better if I just used more discipline, provided more structure in Ray’s life, or if I gave him more guidance.  I just had to be stronger, better – in other words, I needed to be a better parent.  What these others failed to realize what just how lucky they were.  Their kids were healthy, but it had nothing to do with their parenting; they were nothing special.  They were simply “good enough” parents.

The stigma that surrounds mental illnesses is still very strong.  Those of us who have to deal with conditions like OCD know this and spend a lot of energy and effort hiding our symptoms and making sure that no one knows we have a problem.  We know that the ignorance of others can hurt us.  If they knew we had mental troubles, then they might just take away our jobs or take away their friendship and support.  In our case, for example, I worried that Ray’s teachers would treat him differently or that the other students at Ray’s school would shun him. Even today when Ray’s OCD is no longer a major force in his life, we think about how stigma could hurt him.  We wonder what some future employer will think when they learn that Ray has written a book about his OCD experience.  Would they hesitate to hire him, think he might not be able to do the job, or worry that he might harm them in some way?  It is also entirely possible that those considering Ray for a job or for admission into a professional school might not even be aware of their prejudices.  They might just turn Ray down not even knowing that it was because of their own fear and ignorance.

In a perfect world, stigma wouldn’t exist.  Those of who have mental illness wouldn’t have to deal with the ignorance of others but could find help and heal without worrying about their jobs, social structures, and futures.  I’m convinced that if stigma didn’t exist than those who have mental conditions would heal much quicker and could quickly resume their rightful places as employees, students, parents, and friends.

But, until mental disorders assume their rightful place in the medical world as legitimate and understandable conditions, many of us who have them will limp along, tentatively looking for help, and fearing ourselves because others fear us.  I worry that many, who could have been saved, might not make it – all because of stigma.

Today, modern medicine seems capable of curing almost anything.  Have acne?  Take a pill and watch those pimples dissolve away.  Need a new heart?  Chances are you might just get one to replace yours.  Have cancer?  Now, there exists a whole pharmaceutical arsenal from which to draw to help you.  So, it was with hope and expectation that we turned to modern medicine when Ray’s OCD dug in and refused to budge.  Surely, there was a pill he could take that would help him move towards normalcy.

Ray’s first medication was Prozac, one of the many SSRIs that are commonly used to treat depression and also OCD.  It was hard not to have expectations for what this pill would do for Ray.  I knew better than to think that he could simply take these little green and white capsules and have all his OCD miraculously disappear.  But, the hope was definitely there.

Ray did have some response to Prozac, but it was small compared to the looming presence of his OCD.  We eventually worked up on his dose and when that didn’t do much, abandoned Prozac for another SSRI (Zoloft).  Again, we waited, and when this medication initially failed to help Ray, we worked up on the dose until we reached its ceiling.  Still, Ray’s OCD wasn’t waning and at times, it looked like it was gaining an ominous momentum.

Our choices at this point were to try yet another SSRI (like Luvox, Celexa, ect) and if that didn’t work try yet another one until we either found the miracle pill or had worked through this entire class of medications.  The other option was to have Ray try a combination of medicines like a SSRI with one of the newer antipsychotics.  Of course, each attempt wouldn’t simply be a matter of Ray taking these medications for several days before we knew their effects.  Each step would take months.  And, of course, we had to consider withdrawal symptoms with each medication change.  You can’t just stop these medications and not expect to have problems.

When we realized that finding the right medicine or combination of medicines could possibly take years and that it was entirely possible that no combination would work for Ray, we decided to take another path.  Maybe it must our impatience to be done with OCD or the worry I had that Ray would give up fighting his OCD and just let it run his life.

The path we took was therapy, specifically exposure response prevention therapy (ERP).  The experts on OCD often point to ERP as the one therapy proven to help lessen the symptoms of OCD.  But, of course, there’s a catch – ERP is not easy to do.  In fact, 25% of those who start ERP don’t finish it because it’s hard.  With this therapy you are expected to face that which terrifies you and do it over and over again until your brain finally becomes convinced that your fears aren’t real.

Ray did ERP and it worked well for him.  After each session, it was clear that his OCD was receding.  It was amazing to watch – of course, he struggled with it and many times, he wanted to quit.  But, he didn’t, and now OCD is no longer apart of his life.  I just wish that the mental health professionals we turned to for help hadn’t believed so much in their medications and had told us about ERP (we had to find out about it ourselves).

What no one tells us about ERP, however, is how hard it is.  It sounds deceptively easy when we first hear about it, but when we actually attempt it, we find ourselves facing a brick wall.  When I first read about ERP and its success rate, I knew that it was what Ray and I needed to do.  It made sense to me.  The idea was simple.  Stand up to the very things that you fear and eventually, the fear goes away.  If you hate spiders, for example, then maybe if you hang out with them, you will finally understand how harmless they really are.  But, when someone is as scared as Ray was with his OCD, the very idea of facing their fears feels impossible.  At his worst, I couldn’t even get his attention long enough to explain the rudimentary elements of ERP, let alone convince him to try it.

What I finally realized was that I needed a strong motivator for Ray.  Simply telling him that ERP was what the experts recommended, that it would help him with his OCD, or that his life would return to normal if he did ERP did not help at all.  He couldn’t absorb any of these reasons; his OCD was too loud.  I needed to use something that was as loud and as large as his OCD.

Finally, it occurred to me.  I would pay him and pay him well.  Why not?  We all need motivation to move forward in life.  How many of us would do our jobs if we weren’t paid to show up? I know that many parents and therapists would hesitate to use money as a motivator for doing therapy.  After all, shouldn’t I have convinced Ray to do ERP because it was good for him, like doing his homework or brushing his teeth?  Shouldn’t I, as his parent, been able to discipline him enough so that he would do the ERP?  Maybe others would have been more successful than me in convincing Ray to do ERP without resorting to bribery.

What I know now, after all this time and experience, is that using money to get Ray to do the ERP worked and worked well.  It was strong enough to coax him into trying the ERP and to keep him going when it got hard.  Looking back, I have no regrets paying Ray to do ERP.  He is now well, virtually OCD free and going forward in life faster than most of his peers.

And, I would do it again. If OCD ever shows up again, I wouldn’t hesitate to whip out my checkbook and strike its ugly head.

Even if we can’t figure out why Ray ended up with sexual obsessions as opposed to some other type, we do know that Ray is not alone.  In one study in which about 300 people who have OCD were asked about sexual obsessions, it was reported that about 25% had a history of sexual obsessions and that about 13% were currently (ie at the time of the study) having these types of obsessions.  The same study also reported that those who have sexual obsessions often have an earlier age of OCD onset (about 4 years earlier than other OCD obsessions).   In fact, the occurrence of sexual obsessions in OCD often coincides with the onset of puberty, which suggests that sex hormones (testosterone or estrogen) may somehow be involved in the triggering of this type of OCD.

The good news for OCDers like Ray who have sexual obsessions is that this type of OCD is not associated with any additional difficulties.  In other words, those who have sexual obsessions have the same degree of insight into their OCD, response just as well to medication and therapy, and have just as much satisfaction in their sexual functioning as those who have other types of obsessions.

Why did Ray’s OCD take sexual matters as its focus?  We will never know for sure.  The best explanation that I have come across was in an article that directly discussed OCD and sexual obsessions, “Obsessions tend to make the sacred profane… Since sex is heavily laden with emotional, moral, and religious significance, it can become a prime topic for obsessions.” We have also come to one important conclusion:  It doesn’t matter.  And, to spend time and energy trying to find out why Ray’s OCD centers on sexual matters doesn’t help us at all.  We just wish that others around us would think the same.

Ray’s symptoms centered mainly on sexual matters.  Why his OCD landed on this topic we have never figured out.  But, we are not alone.  Many of our fellow OCDers have problems with sexuality. 

When Ray was at his worst, he was almost nonfunctioning.  He couldn’t touch anything at home because his OCD made him think that the entire house and its contents were contaminated with sexual matter (ie semen).   He couldn’t walk across the floor without panicking, couldn’t eat food prepared by someone else because he couldn’t be sure it wasn’t contaminated, and essentially couldn’t touch anything in the house because of his fears.  There was even a particular bathroom that he couldn’t enter because his OCD thoughts had become so twisted.  He even panicked when others had used that bathroom because his OCD made him think that they had spread the contamination from that bathroom.  He also couldn’t enjoy movies or television programs because every time a female character appeared on the screen, his OCD would trigger and cause him extreme discomfort.  We rarely went anywhere because inevitably he would see someone who would cause his OCD to flare.

How Ray got from his lowest point to where he is now is the main subject of his book (“The Ray of Hope:  A Teenager’s Fight Against Obsessive Compulsive Disorder”).  He describes in detail the therapy he used to make this remarkable transformation.  He also describes many other aspects on OCD, such as medication, dealing with teachers, friends, and family, and what mistakes he made along the way. 

I hope to use this blog to discuss more about OCD and how it affects teenagers.  When Ray’s OCD was out of control, I looked for help from many different sources.  I read books, asked our local mental health professionals, and searched through many websites.  But, these sources took me only so far.  We needed more and using our own creativity and strength, we finally found our way out of OCD.  I now hope to share how we did this.