OCD and the Teenage Brain

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This post first appeared on my blog in December 2013……

“But he’s only nineteen. His frontal lobe development won’t even be complete until he’s twenty-four. Of course he needs your guidance with this decision.” These are the words spoken by my son Dan’s therapist when we sought his advice. Dan had decided to leave college so he could stay “as long as possible” at the residential treatment program he was attending. Thankfully we did intervene, and Dan returned to college after a nine week stay in the program.

This was the first time I realized there is a biological reason why teens and young adults think and act the way they do, often exasperating their parents. In this easy-to-understand article, the author (who happens to be a pediatric neurologist as well as a mom) explains that the frontal lobes, the part of the brain that says: “Is this a good idea? What is the consequence of this action?” are not fully connected in teens and young adults. My guess is anyone who has parented a teenager is now nodding his or her head in agreement.

So what does this mean for teens and young adults with obsessive-compulsive disorder? Well, not only are these young people battling OCD, they are also dealing with their not yet completely developed brains. Both of these factors often involve a lack of good judgment as well as the inability to make good decisions. A double whammy. And for parents and other loved ones of teens suffering from OCD, it can also be doubly challenging. In Dan’s case, we were fortunate he was never an antagonistic teen, but I still often found myself shaking my head in disbelief: “What was he thinking?” Was it his OCD or his age that caused him to think and act a certain way? Who knows?

Decision making and impaired judgment are not the only deficits in a “young” brain. I’ve  written about how teens experience more difficulty in overcoming fear than adults and children and how this can affect their OCD, as well as their treatment success. Of course, if OCD is present and diagnosed in childhood, treatment early on can help ease the chaos of the teen years.

I don’t have much advice, but I do find it somewhat comforting that not everything can be blamed on OCD when dealing with teens and young adults with the disorder. Some of their baffling behavior should diminish with age.  And the rest? Exposure and response prevention (ERP) therapy should do the trick.

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Where’s Dan?

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I have been fortunate to share the story of my son Dan’s recovery from severe OCD with so many people. The fact that he is doing so well is concrete evidence that obsessive-compulsive disorder, no matter how severe, is indeed treatable, and it is gratifying to know that those who are suffering have found hope through our story.

When I connect with those who have either read about Dan’s journey or heard me speak about him the first question they often ask is “How is Dan now?”

I am so incredibly thankful that the answer continues to be, “He is doing very well.”

The next question is usually something such as, “Where is he? How come we never see him at these conferences/meetings/or other OCD events?”

Some time ago I wrote a post discussing whether “OCD advocacy” should be a responsibility of those who have recovered from severe OCD. Better than my post, I believe, are the comments from those who pointed out that advocacy comes in many ways, shapes, and forms. By continuing to do well, keeping his OCD at bay, and living his life to the fullest, Dan is giving hope to all those who suffer from OCD.

Maybe my son’s choice to not focus on his OCD any more than he needs to is one of the reasons he has learned to cope so well. As I have heard many people with  OCD say, “OCD is something I have, not something I am.” Dan has made a conscious effort to put his OCD on the back burner and focus wholeheartedly on living his life to the fullest. He has fought his way back from the brink of despair, and perhaps this fact fuels his resolve to leave OCD out of his life as much as he can.

But I’m not fooling myself. I know at some point Dan might not have a choice. While he might go years with mild obsessive-compulsive disorder, there’s still a chance it could flare up, at any time, with a vengeance. It could overtake him again. The bottom line is I don’t know what the future holds, and neither does Dan. Uncertainty. The word that those with OCD (and many of us without the disorder) hate. Nobody knows what will be.

For now, however, I will revel in the fact that Dan is doing well. I will continue to advocate for OCD awareness and proper treatment, and I will respect his decision to not want to make OCD a focal point of his life. Because after all, isn’t that the whole idea?

When Instincts are Wrong

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This post first appeared on my blog in 2011 (wow, I’ve been blogging a long time!):

At times I’ve mentioned that you should trust your instincts when helping a loved one deal with obsessive-compulsive disorder.

Turns out that’s not always true – especially when dealing with family accommodation.

Family accommodation refers to a family member’s participation or assistance in the rituals of their relative with OCD. Some common examples of family accommodation  include reassuring (continually responding to questions such as, “Will I be okay if I do this or don’t do that?”), altering a family’s plans or routines, and giving in to your loved one’s OCD related requests. By accommodating in these ways, we are basically adding fuel to the fire. While we might help reduce our loved one’s anxiety in the short-term, we are actually prolonging the vicious cycle of OCD. Many studies, including this one, conclude that more family accommodation leads to more severe cases of OCD, and more distress among families.

My family and I were as guilty as can be when it came to accommodating, especially before our son Dan began proper treatment. This is where the instincts came in. As a mother, I just wanted to make everything all right and relieve my child’s pain. That was my instinct. So if Dan wanted to sit in a certain seat or eat only peanut butter and jelly sandwiches at midnight, I let him. What harm could it do? Turns out – plenty. By allowing these rituals to continue, I was validating his irrational thoughts, lowering my expectations of him, and giving him no incentive whatsoever to fight his OCD.

A light bulb moment occurred when my husband spent an afternoon shouting basketball scores to Dan in another room because Dan’s OCD would not allow him to view the television. It was at this point that we realized what we were doing was wrong and it was time to go against our instincts. “You want to know the score, Dan?  Then come watch the game!”  was the assertion that began our conscious attempt to not willingly  accommodate him. I say “willingly” because it was often difficult to know what was OCD related and what wasn’t. When Dan wanted to do errands at  1:00 PM instead of 11:00 AM, was it really because he was busy, or was that just what his OCD was dictating at the time?

We’ll probably never know how much we unknowingly accommodated our son. But it wasn’t a problem for too long. Once Dan began his intensive exposure and response prevention (ERP) therapy and better understood what needed to be done to free himself of OCD’s grip, he made sure to let us know whenever we were inadvertently accommodating him. We worked as a team (though all the really hard work was his) to beat his OCD.

Back to School with OCD

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A version of this post first appeared on my blog in August 2013………

I’ve previously written about taking obsessive-compulsive disorder to college, where I focused on establishing a good support system for those with OCD who are embarking on this exciting, but often anxiety-provoking journey. I discussed how important communication is with all school personnel, from the dean of students to teachers. The more support the better.

But what happens when the support you deserve, and are entitled to, is not afforded you? What if one of your teachers thinks OCD is no big deal, or not a real illness? How do you deal with a situation like that?

During his senior year of college, my son Dan was discriminated against because of his OCD. I know discriminate is a strong word, but it fits. According to the Americans with Disabilities Act (ADA), college students with documented disabilities are entitled to reasonable accommodations. While offering wheelchair ramps for those who can’t walk is an obvious compliance, accommodations for other issues, such as OCD, are not as clear-cut. Unfortunately, there are still many college professionals who know little, or have misconceptions, about obsessive-compulsive disorder. Students themselves might not know what they need until after the fact. Indeed, the complexity of the disorder can make the establishment of accommodations difficult. The Academic Resource Coordinator at Dan’s school, the expert who dealt with students with disabilities, “wasn’t sure” if Dan’s issue of concentrating more on details than the big picture was related to his OCD.

The best advice I can offer if you find yourself in a similar situation is to know your rights. Read up on the ADA and stand firm. Support, as well as documentation in writing, from a therapist or psychiatrist (preferably your own), can be invaluable. While college is typically a time of reduced parental involvement, I am convinced that if my husband and I hadn’t joined in Dan’s fight, the outcome would not have been in his favor. We had to bring our son’s case all the way to the president of his college, but he ultimately got what he deserved: fair treatment.

Because Dan’s OCD wasn’t diagnosed until he was seventeen (and because we homeschooled), our family never dealt with the need for accommodations during the K-12 school years. Again it’s important to know your rights and options. Laws and plans are in place, particularly for schools that receive federal funding (this includes all public schools). So many school professionals simply do not understand OCD. Until this changes, it is up to us to educate them. This is just one of the many reasons why parents need to be well prepared to advocate for their children.

Whether you’re sending your child off to kindergarten or college, this exciting time can also be stressful.  Add obsessive-compulsive disorder to the equation and chances are you’re also adding an extra layer of anxiety. That’s understandable. I do think, however, that it’s important for parents to remain positive and convey an air of confidence that everything will work out just fine. Because it probably will. But if problems do arise, we need to let our children know, no matter what their age is, that we will be there to support them, advocate for them, and love them every step of the way as they navigate their educational journey.

OCD and Vacations

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August is a popular time for many of us to take vacations. That’s what summer is all about, right? We look forward to our vacation all year. But what if you have obsessive-compulsive disorder (OCD)? How does going on vacation, planning a vacation, or even thinking about a vacation affect you and those around you?

When my son Dan’s OCD was severe, he could barely move, let alone go on a vacation. But when his obsessive-compulsive disorder improved to a moderate level, he planned a trip to Canada with a friend for his winter break. He was excited about going, and from all accounts had a great time exploring and trying out exciting new activities such as dog sledding. He wasn’t able to leave his OCD behind completely on this trip, but still managed to enjoy himself most of the time.

I, on the other hand, was worried the whole time he was gone. I was concerned about the stress of him traveling (he flew), the change in environment and routine, the absence of therapy (and his therapist), and the inevitable trials and tribulations that come along with vacations. Also, what if he needed help while away? Would he tell us? Where would he turn? Who would he call?

Indeed, the very nature of vacations is often conducive to stress for all of us, not just those with OCD. But if you have obsessive-compulsive disorder, dealing with changes in daily routines as well as sleep routines, might be particularly difficult. Perhaps you’re staying with friends or family when you are used to being alone. Or perhaps you are alone in a hotel room, when you are usually surrounded by people at home. Your food choices might be different. And if you suffer from contamination OCD, you are faced with many challenges on vacation. Public toilets in particular seem to be a trigger for a lot of people with OCD.

Still, Dan’s vacation turned out to be more stressful for me than it was for him because he was able to do what I could not: embrace the uncertainty that comes with a vacation – that same uncertainty that comes with all of life.

Those who suffer from obsessive-compulsive disorder who are able and willing to go on vacation are indeed facing that uncertainty head-on. Will their OCD improve while they’re away? Maybe. Sometimes getting away from old, familiar triggers into a totally new environment will quiet OCD. Or will their OCD spike due to new triggers, or because of any of the other reasons mentioned above? Maybe. It’s certainly possible. Of course, there is no way of knowing until you go. In my opinion, if those with OCD aren’t allowing their disorder to prevent them from actually taking their vacation, the trip, whatever the outcome, should be considered a success.

That’s the thing. We can’t let OCD call the shots. We need to continue to live our lives as fully as possible. So whether your summer involves vacations from OCD or with OCD, I hope your experiences are positive ones that create some great memories.

OCD and Showering

 

When my son Dan was in the throes of severe obsessive-compulsive disorder in 2008, he would sit in his “safe chair” for eight hours at a time. He was literally “stuck.” While I didn’t realize it at the time, getting stuck, or more accurately, becoming a slave to OCD’s demands, is part of what severe OCD is all about. Never-ending compulsions take over your life as you try to achieve certainty that all is well.

I’ve always found it particularly heartbreaking when OCD latches on to our most basic needs such as loving relationships, eating, and physically caring for ourselves. One of the more common compulsions that is often used as an “example of OCD” is hand washing, which can indeed be so severe that scarring, bleeding, or infections occur. The person with OCD cannot stop washing until their doubt and anxiety subside.

What perhaps is less known to people who are not directly affected by OCD is that showering is also a common compulsion. While those with obsessive-compulsive disorder might believe they are just trying to get clean, showering as a compulsion serves the same purpose as all compulsions – to reduce anxiety and uncertainty. Some people will insist on using scalding hot water, while others will have rituals that need to be done in a certain manner. If something is done “incorrectly,” the person with OCD feels the need to start all over again. At the very least it is tiring and draining, and in the worst-case scenarios it is completely debilitating. I personally know of a young woman who got “stuck” in the shower for ten hours and had to be physically removed. As I said – heartbreaking. A basic activity of daily living turned into a nightmare.

What leads to this nightmare? How and why do things get that bad? Well, as with all types of OCD, it starts with an obsession. In those with shower compulsions, obsessions typically include contamination fears or germ phobias, but that isn’t always the case. OCD has an impressive imagination and can latch on to anything. For example, someone with OCD might fear harm coming to someone they love if they don’t wash each body part ten times in the shower. While the person with OCD typically realizes this makes no sense, there is always that doubt, and the compulsions are then carried out. Unfortunately, that’s never the end of it. The reassurance that compulsions provide is addictive and just as with drugs, tolerance rises and more and more compulsions are needed to feel that sense of relief. Before you know it, you’re in the shower, unable to get yourself out.

But there truly is good news. Obsessive-compulsive disorder, no matter how severe, is treatable. The frontline psychological therapy for the treatment of the disorder is exposure and response prevention (ERP) therapy, and it works. Remember the young woman who was stuck in the shower for ten hours? After two months of intensive ERP therapy, she now easily takes fifteen-minute showers. She is in charge of her showers, and her life, now. Not OCD.

 

 

 

OCD and Sunshine

When my son Dan was dealing with severe OCD, he would often be awake all night, pacing throughout the house. It was not unusual for me to get up in the morning and find him fast asleep on the living room floor, or wherever else he happened to finally collapse from exhaustion. Even when his symptoms began to improve, he still could not seem to fall asleep at a normal hour and would be awake until 4:00 am or so. Not surprisingly he’d then sleep half the day away. His sleep cycle was all out of whack.

It turns out that this abnormal sleep pattern is not unusual in those with OCD and has warranted the attention of researchers. In this July 2018 article published in the Journal of Obsessive-Compulsive and Related Disorders, scientists determined that living at higher latitudes, where there is less sunlight, appears to result in an increased prevalence of OCD.

In regards to the delayed sleep-wake pattern similar to what my son Dan experienced, Professor Meredith Coles, first author of the study, explains:

“This delayed sleep-wake pattern may reduce exposure to morning light, thereby potentially contributing to a misalignment between our internal biology and the external light-dark cycle. People who live in areas with less sunlight may have less opportunities to synchronize their circadian clock, leading to increased OCD symptoms.”

In other words, if you sleep through the morning hours of sunlight, you have less chance of “catching up” with your sun exposure if you live in areas with less sun.

Professor Coles finds the results of this project exciting as they provide a new way of thinking about OCD. She says:

Specifically, they [the results] show that living in areas with more sunlight is related to lower rates of OCD.

I find the results of this research quite interesting, though not particularly shocking. We already know that lack of exposure to sunshine can affect our mental health – those with SAD (seasonal affective disorder) can certainly attest to that.

Sometimes results of studies leave us with more questions than answers. Why do those with OCD often have abnormal sleep cycles to begin with? Is it anxiety keeping them awake, or is it something else? Professor Coles wants answers to these questions as well and says that future studies are in the works including testing a variety of treatment options that address sleep and circadian rhythm disruptions. She says:

“First, we are looking at relations between sleep timing and OCD symptoms repeatedly over time in order to begin to think about causal relationships,” said Coles. “Second, we are measuring circadian rhythms directly by measuring levels of melatonin and having people wear watches that track their activity and rest periods. Finally, we are conducting research to better understand how sleep timing and OCD are related.”

Obsessive-compulsive disorder can be such a complex disorder so it is always encouraging to hear of research being done on different aspects of it. Who knows? Maybe these studies will somehow lead to better treatment options, or even a cure, for OCD. Surely that would help us all sleep soundly!