Happy Birthday Ocdtalk

by stuart miles freedigitalphotos.net

by stuart miles freedigitalphotos.net

Four years ago I gingerly posted my first blog entry. I knew I needed to tell my family’s story with the hope of helping others, but beyond that, I had no idea, or expectation, of what was to come.

Fast forward four years. I’ve have the good fortune of being published on many other sites, and still write monthly for Psych Central and Mentalhelp.net. I’ve also been an invited speaker at OCD conferences.

I have met amazing people, both in person and virtually, who have shared their stories; some of hope and triumph, and others of frustration, torment, and despair. I am inspired by each of them.

One of my posts led to the creation of the OCD Network to Recovery, which facilitates connections between those in the throes of OCD with those who have successfully completed exposure and response (ERP) prevention therapy.

My book, Overcoming OCD: A Journey to Recovery, will be available in less than a month, and there are already several events planned after its arrival (more on that in a future post). Dr. Seth Gillihan (my co-author) and I met through ocdtalk.

With the upcoming publication of my book, some people have asked if I will continue to blog. The answer is a resounding YES!  The reason for this answer is simple: There are still people with obsessive-compulsive disorder who are suffering, families who feel alone and don’t know where to turn, and health care providers who aren’t aware of the proper therapy for OCD. There is still a lack of understanding among the general public as to what OCD really is. Those of us who have first-hand knowledge as to how devastating an illness OCD can be have the potential to inform, educate, and help others.

Of course, the success of ocdtalk and the opportunities afforded me have only materialized because of you, all my readers, who read, comment on, and support my blog. Thank you for all of your encouragement along the way. I am grateful for each and every one of you and hope you will continue to follow ocdtalk wherever our journey may lead.

 

 

 

 

 

Posted in Mental Health, OCD | Tagged , , , , , | 18 Comments

Worry and Uncertainty – Then and Now

by gualberto107 freedigitalphotos.com

by gualberto107 freedigitalphotos.com

During this busy holiday season, I will occasionally share some of my older posts. This one is from May 2012.

When I was a junior in college back in the seventies, I spent the year studying abroad in England. Studying abroad back then wasn’t like it is now. No organized programs with groups; just go on your own, and find your way. And that’s just what I did. I had no cell phone, computer, or email. No way except  good ol’ fashioned snail mail to communicate with my friends and family back home. If urgent, my parents could contact someone at the university I was attending, but it would be an ordeal to track me down, and clearly would only be done in a bona fide emergency.

Over the years, as our own children have traveled the world, my friends and I have often wondered how our parents survived the uncertainty that surely came with this lack of communication. At least we have cell phones, Facebook, Twitter, email, texting, Skype, instant messaging, and more to keep us in contact with our children, to make sure they’re where they should be, and that they’re okay. How much easier it is now than it was back then to be certain all is well.

But is it really? Surely, all this communication might give us some peace of mind, but as we know, certainty is an elusive thing. We don’t really know for sure that all is well, or will continue to be well.  And all this communication can backfire. “She sounded sad on the phone.” “I didn’t like the way he looked on Skype.” “Why is she on Facebook now when she’s supposed to be out with her friends?” “He was supposed to text me but didn’t. What’s wrong?” Increased communication can be fodder for our worries, perpetuating that need for certainty that we crave. It’s so easy to worry now, because we have so much to worry about; we are constantly being fed new material.

What my parents needed to do back then was accept the uncertainty of not knowing what was going on with me, and just believe that I’d be okay. They had no other way to get through that year intact. In other words, they needed to learn to trust the universe. As author Jeff Bell says in When in Doubt, Make Belief, “Choose to see the universe as friendly.”  This is a conscious choice, and something that is not always easy to do; but it’s necessary, I believe, for good mental health.

Maybe with this surge in our capacity to connect with one another and have access to all kinds of information, we have somehow lost the ability, or need, to believe in the universe.  We allow ourselves to get caught up in worry over little things (like our child’s facial expression on Skype). Of course this issue is a major one for those with obsessive-compulsive disorder, but also something almost everyone can relate to on some level. We need to do what my parents, and certainly those who came before them, were forced to do: focus on the big picture and have faith that everything will be okay.

Posted in Mental Health, OCD | Tagged , , , , , , | 8 Comments

Raising Awareness about OCD

freedigitalphotos.net by stuart miles

freedigitalphotos.net by stuart miles

If you haven’t yet seen this recent Newsweek article about John Cleaver Kelly’s story, I highly recommend reading it. I think it does a good job of depicting the torment and suffering OCD can cause. How could it not? John committed suicide. Articles such as this one are so important because we are still fighting an uphill battle in regards to the public’s understanding of OCD. As a case in point, this morning I came across an article on OCD- “Obsessive Christmas Disorder.” Sigh.

John’s story also highlights the fact that proper treatment for OCD is still astonishingly difficult to find. John’s father, a physician, made sure his son was admitted to the best hospital, but they didn’t know how to treat obsessive-compulsive disorder. This would be a ludicrous scenario if we were talking about anything other than a brain disorder (I’m not using the term mental illness here, because I believe there should be little to no distinction between “physical” and “mental” illnesses, but that discussion is for another post). Imagine going to the hospital with acute appendicitis, complications from diabetes, or a heart attack, for example, and being surrounded by people who don’t know how to help you. As I said, it’s ludicrous.

Additionally, I would have liked to have seen more of an explanation and discussion of exposure and response prevention (ERP) therapy in the article. Because finding the proper treatment as well as qualified therapists can be so elusive, I feel it can’t be emphasized enough that ERP is the first line psychological treatment for OCD, and it is evidence-based. This needs to be stressed not only to those suffering from OCD, and their loved ones, but to all health professionals as well.

For me, the most encouraging part of the article was learning about the creation of the JCK Foundation, whose main goal is to “raise public awareness about the paralyzing effects of OCD.” This is done through speaking tours, public events, and a yearly softball tournament in memory of John.

In Dobb’s Ferry, where John grew up, awareness of how serious OCD can be has skyrocketed. The JCK Foundation aims to spread this awareness throughout the country. This is an amazing undertaking, one that John Cleaver Kelly, no doubt, would approve of. And while many of us might not have the opportunity to be involved in foundations, we can still do our part, one by one, to raise awareness about OCD and its proper treatment. As Margaret Mead said, “Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has.”

 

 

 

 

 

 

Posted in Mental Health, OCD | Tagged , , , , , , , , | 4 Comments

OCD and Medication

 

pills This week I’m sharing one of my posts from May 2012. I plan on being back next week with something new!

The topic of medication for obsessive-compulsive disorder comes up a lot in blogs, and always seems to incite lively conversation. There is talk of the stigma surrounding medication; some patients admit to feeling weak, or like a failure, for needing meds, even though intellectually they know it’s no different from taking medication for any other illness. Others are adamant about never taking anything because it’s just “not for them,” while some are completely fine with taking meds. There are those who say meds have wreaked havoc on their lives, while others swear that medication literally saved their lives. Doctors themselves confirm that the use of psychotropic medication involves a lot of “trial and error.”

Everyone’s story is different, of course, and I think that’s what makes the issue of medication for OCD so complicated. There’s no set protocol. What helps one person may hurt someone else. What works for someone now might not work for them in six months or a year, or it’s possible one particular medication could be helpful for their entire lives.

For me, the question that often seems so hard to answer is “How do you really know if your meds are helping you?” In a previous post, I wrote about how poorly my son Dan was doing when he was taking various medications to combat his OCD. At the time I thought, “If he’s this bad off with the meds, I hate to think what he’d be like without them.”  Turns out the meds were a huge part of the problem, and once off them, he improved by leaps and bounds.

Of course this is just his story. Others have stories of great improvement with meds. Still others have stories that are not so cut and dried, so obvious. If someone has been on a medication for a year and is feeling “okay,” we don’t know if they would feel better, or worse, without it. Unless we’re able to clone ourselves and conduct a controlled experiment where the only variable is the medication, there is no way of really knowing how a drug is affecting you.

Because of this ambiguity, I think it is so important to share our stories, both of success and failure, in regards to using medication for OCD. Sharing can raise awareness of side-effects, drug interactions, and withdrawal symptoms. It can also bring attention to the possible benefits of certain drugs, as well as new medications on the horizon. While having a doctor you trust is essential, it is also important to advocate for yourself and learn everything you can, good and bad, about the medications you are taking or considering.

Posted in Mental Health, OCD | Tagged , , , , , , | 21 Comments

New Reasons to be Thankful

Sunflower-TurkeyAs Thanksgiving approaches, I’m taking some time to reflect on how much I truly have to be thankful for. This year, for the first time in eight years, my whole family will be together for Thanksgiving dinner. I’m looking forward to a wonderful day.

My heart goes out to those individuals and families whose lives are currently in turmoil because of their, or their loved ones, struggle with obsessive-compulsive disorder, or any illness for that matter. Unfortunately OCD doesn’t typically take a break during the holiday season, and might even intensify during this time of year. Many OCD sufferers need help now, but they are not getting it.

The road to recovery from OCD is not easy, and one of the biggest obstacles faced is the shortage of proper therapists and treatment centers.

And so I am particularly thankful this Thanksgiving to hear the news that Rogers Behavioral Health System plans to open new OCD and anxiety treatment centers in Chicago and Nashville.

The clinics, which are scheduled to open in mid-2015, will offer intensive outpatient programs, as well as partial hospitalization programs. Treatment will typically last four to six weeks. Staff will include board-certified child and adolescent psychiatrists, psychologists and therapists, all trained in cognitive behavioral therapy (CBT), with an emphasis on exposure and response prevention (ERP) therapy to treat OCD and related anxiety disorders. This is not the first time Rogers is branching out. In September 2014, they opened a center in Tampa, Florida, their first location outside of Wisconsin.

This is truly a reason to celebrate. Here we have concrete evidence that we are moving in the right direction to give people access to the treatment they deserve. Yes, there are still not enough quality treatment centers, and yes, the ability to pay for them even if they exist is also an issue. But we have to start somewhere.

If you’d like to learn more about these two new centers, you can check out this article. In the meantime, I wish all my readers who celebrate Thanksgiving a happy and healthy holiday, surrounded by those you love.

 

 

 

 


 

Posted in Mental Health, OCD | Tagged , , , , , , , , , | 8 Comments

Beyond a Reasonable Doubt

by kittisak freedigitalphotos.net

by kittisak freedigitalphotos.net

Well, I had an interesting week. I was impaneled on a jury for a criminal case, and was also selected as the forewoman for that jury. (Before you get too impressed, I was chosen at random).

Each of us on the jury listened intently, not only to all of the evidence presented in the case, but also to the words of the judge, who continually stressed to us that in order to arrive at a guilty verdict, we had to be convinced beyond a reasonable doubt that the defendant did  indeed commit the crime for which he was accused. The judge went on to say that while most people know what beyond a reasonable doubt means, it is a difficult concept to actually explain.

Not surprisingly, my thoughts turned to obsessive-compulsive disorder. As we know, doubt is what fuels the fire of OCD, so much so that it is often known as the doubting disease.  OCD sufferers need that certainty; they need to know they locked the door, or didn’t run someone over, or didn’t say the wrong thing. And if they’re not sure? Well, they’ll just check again. And so the vicious cycle begins. I don’t have OCD, so this is not typically an issue for me. Sitting on that jury, however, with someone’s fate in my hands, I felt my palms start to sweat, and the weight of the world on my shoulders. How can I be sure?

Then it hit me. I can’t be sure. That’s why the judge didn’t say, You have to be sure. Instead he said we had to be convinced beyond a reasonable doubt. There is very little we can be sure of in this world. Everything can be questioned. I assume the sun will rise tomorrow morning, but I don’t know that for sure.

In the end, our verdict was not guilty. While we each had a gut feeling the defendant committed the crime, there was just not enough evidence that allowed any of us to be convinced beyond a reasonable doubt.

I left the courthouse feeling uneasy, and only later realized why. Uncertainty. Did we make the right decision? How will I ever know….for sure?

I won’t.

And so, just as those with OCD need to do, I consciously chose to feel the anxiety, accept the uncertainty of the situation, and go on with my life.

Isn’t that all any of us can, and should, do?

Posted in Mental Health, OCD | Tagged , , , , , , , , | 14 Comments

OCD, Social Anxiety Disorder, and Treatment

by stuart miles freedigitalphotos.net

by stuart miles freedigitalphotos.net

I recently read this article on social anxiety, and it struck me how many of the examples listed reminded me of my son Dan when his OCD was severe.

Those with social anxiety disorder are typically terrified of how others will perceive them, and this often leads to, you guessed it, avoidance of various situations. While public speaking, or being the center of attention in any circumstance, might be obvious triggers, even something as mundane as having a cup of coffee with a friend might be anxiety-provoking enough for a sufferer to just not show up.

In this post I wrote over two years ago, I talked about Dan’s sense of hyper-responsibility, an inflated sense of responsibility. Because he felt his thoughts and actions might cause harm to his friends, he dealt with this by, you guessed it again, avoiding them. He isolated himself, and while his actions could easily have been mistaken for social anxiety disorder, in his case it was his OCD that caused him to behave this way.

Once again, I am reminded how OCD, social anxiety disorder, depression, generalized anxiety disorder – just to name a few, are just labels to describe specific symptoms, a way to try to to maintain some order and clarity over the messiness of mental illness. While these labels serve a purpose, I believe our main goal should always be striving to understand what is going on with the whole person.

So did Dan also have social anxiety disorder, in addition to his diagnoses of OCD, GAD (generalized anxiety disorder), and depression? Possibly. It certainly seems as if he fit the criteria. Thankfully, for Dan, it didn’t matter. Once his OCD was under control, his other diagnoses fell by the wayside.

Of course, getting the right diagnosis, as well as the right treatment, for OCD (and other disorders) doesn’t always go smoothly. While it is essential to have a good therapist, it is equally important for those who are suffering to be honest with their health care providers. As we know, those with OCD typically realize their obsessions and compulsions make no sense. This realization, unfortunately, might interfere with OCD sufferers being completely honest with their doctors; it’s just too embarrassing for them to admit their thoughts and actions (even though it’s likely the doctor has heard it all before). It’s understandable, and even ironic. We expect those with OCD, social anxiety disorder, etc., to be able to talk about these intimate details, when as I said before, having coffee with a friend might be too difficult a task!

But it must be done in order to recover.  For both OCD sufferers and those with social anxiety disorder, facing ones fears is the ticket to living the life you want. If you think you suffer from one or both of these disorders, I hope you’ll commit to facing your fears, and you can start by meeting with a competent therapist.

 

 

 

 

 

 

 

 

 

 

 

 

Posted in Mental Health, OCD | Tagged , , , , , , , | 14 Comments