Ocdtalk and Gratitude

 

heart

by sira anamwong freedigitalphotos.net

 

On December 18, 2010 I started this blog, determined to try to help others navigate the often turbulent – and terrifying – waters of obsessive-compulsive disorder. My family was just emerging from this ordeal ourselves and I felt that talking about my son’s journey through severe OCD could benefit others.

Still, I had my doubts. Who would want to hear my thoughts? I’m not a psychologist, and I don’t personally have OCD. But I took a leap of faith and decided to jump right in, propelled forward by the memories of how alone I felt when my son Dan was dealing with this horrible illness. If I had heard at least one story of hope back then, it would have made all of our suffering much more bearable. And now here I was – with a real story of hope. I had to share it.

The rest, as they say, is history.  The blog has reached more people than I ever thought possible. My book, Overcoming OCD: A Journey to Recovery was published by Rowman & Littlefield in January 2015 and the paperback version followed in November 2017. I have been fortunate to speak all over the country and have been interviewed many times as well. It has been, and continues to be, incredibly rewarding.

As worthwhile and exciting as all of these events have been, what has been most gratifying to me over the years has been the individual connections I have made. From comments on my blog to personal emails, phone calls,  and meetings, it has been a privilege to be a part of all of your journeys.

I have been posting at least weekly since that very first entry back in 2010. It is time to step back a little. Ocdtalk is still alive and well, and I will still be sharing news and thoughts about OCD with you – just not as frequently as I have been. It will be a new chapter for ocdtalk. I will continue to write about OCD and other mental health topics for Psych Central.

In this season of Thanksgiving, I want to thank each and every one of you from the bottom of my heart for all the support you have given me over the years. I am truly grateful and it is an honor to continue to be part of your lives.

 

 

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OCD and Mindfulness

mindful young woman

freedigitalphotos.net by hyena reality

A version of this post first appeared in February 2014…….

For those of you not familiar with the concept of mindfulness, it is the act of focusing on the present moment in a nonjudgmental way. Just noticing and accepting what is.

Anything strike you about this definition? To me, it seems as if mindfulness is the exact opposite of obsessive-compulsive disorder:

Focusing on the present moment? Those with OCD rarely do that. Instead they either find themselves immersed in the world of “what ifs,” worrying about everything that might go wrong, or agonizing over things they think might have already gone wrong.  Lots of thinking about the future and the past. Not so much about the present.

And in a nonjudgmental way? If you have OCD, you’re probably laughing right now, because chances are you judge yourself all of the time. Whether it’s blaming yourself for bad things that might happen in the future or that possibly happened in the past, or thinking of what you did wrong or will do wrong or should have done differently, those with OCD are continually assessing their thoughts and actions. And because they often deal with cognitive distortions, these assessments are typically incorrect. One type of cognitive distortion is thought-action fusion, where people believe that thinking bad thoughts is akin to performing the action associated with the thought, or the belief that thinking these same thoughts can somehow make them come true. For example, new moms sometimes have thoughts of hurting their babies. Most will acknowledge the thoughts as having no meaning and let them go. But moms dealing with thought-action fusion might be horrified and immediately consider themselves terrible people, unfit parents, and a danger to their children, because what kind of mother thinks that way? Judgment judgment judgment.

In spite of the fact (or maybe because of it) that it is, in many ways, the opposite of OCD, many  people with OCD who practice mindfulness find it very helpful. To be able to focus on what is really happening in any given moment, as opposed to dwelling on the past or anticipating the future, takes away the power of OCD. So while exposure and response prevention (ERP) therapy remains the front-line treatment for OCD, mindfulness is a good additional tool. It can help with ERP as well as with the anxiety and fear that come along with OCD.

While the concept of mindfulness is simple, it is not always easy to put into practice. It takes discipline, awareness, practice and perseverance, but it is so worth it. I personally have become more mindful in my own life. While I don’t have OCD, I am quite prone to “what ifs,” and when I find myself heading down that road I now easily (usually) stop myself and focus on the present moment. An act so simple, yet so powerful.

And while I welcome the calm that mindfulness brings me, I am even more thankful for an additional unexpected benefit: gratitude. Focusing on the present allows me to stop and catch my breath, and when I do that I somehow become keenly aware of all the good in my life. Not in the past, and not in the future, but right now. Because, for all of us, right now is what really matters.

 

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OCD and Lack of Family Support

arguing

FreeDigitalPhotos.net by David Castillo Dominici

A version of this post first appeared on my blog in February 2014……….

I have written about OCD and the importance of family involvement in treatment, and some of the comments I received on that post proved to be eye-openers for me.  My  assumption has always been that family members, especially parents, are totally supportive of their loved one with OCD. This theory has been backed up over and over. I get comments and emails from family and friends of those with OCD who desperately want to help them. I connect with people at OCD conferences who want to learn whatever they can about the disorder so they can encourage and advocate for their loved ones. I think of my own extended family who, when things were rough for Dan, offered to help out in any way they could.

While my experiences are real, my view is skewed. Obviously I don’t hear from parents who are not supportive of their children. Why would I? And these same people are not attending conferences or reaching out to others or advocating for their loved ones. There are many reasons why this might be, such as believing their child should just “get over it,” or not acknowledging they are dealing with an actual illness. Maybe they’re embarrassed. To me, the reasons don’t matter much. What matters is there are people with OCD out there who are not only suffering, they are suffering alone.

This is heartbreaking. Even with all of the support in the world, obsessive-compulsive disorder can be a devastating illness. But having to deal with OCD without that support? I can’t even imagine. And my guess is that many people with OCD who are unsupported are also ridiculed and totally misunderstood by those they love. Nobody deserves to be treated that way.

I am not talking about ignorance here. Ignorance is the lack of knowledge. Most of us who find ourselves catapulted into the world of OCD start off ignorant. I sure did. But we do what we’d do if our loved one had been diagnosed with any illness. We learn as much as we can about it and try to find appropriate help. I know there is stigma to deal with as well as preconceived notions and misinformation about OCD. I know families and their histories can be complicated. I get this. But it shouldn’t matter. When your child is suffering you need to put all that baggage aside, learn the truth about OCD, and take appropriate action.

For those suffering with OCD who have not gotten the support they need from their families, I hope they can find the strength to develop the support system they deserve. Good friends, clergy, social workers and teachers are some examples of people who could be helpful.

Unfortunately, I know I am likely preaching to the choir here. Those who have no interest in learning about OCD or helping their loved ones are probably not reading my blog. I hope someone can reach them.

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OCD and Physical Pain

pain

by marin freedigitalphotos.net

 

Many people believe that physical pain and mental pain can be connected. I often hear from people with severe OCD who also suffer from debilitating physical pain. It’s not unusual, once their OCD is treated, for their physical symptoms to subside or even disappear completely.

Sometimes the pain those with OCD experience is directly related to compulsions they perform. For example, some people with OCD are compelled to perform extensive rituals while showering, perhaps twisting and turning in particular ways for a specific amount of time. This might lead to chronic back or neck pain. Repetition is common with compulsions and can lead to physical pain such as arthritis or carpal tunnel syndrome. I have heard of those who deal with trichotillomania experiencing relentless pain in their arms, wrists, hands and fingers. Also, turning doorknobs and tightening water faucets are other common compulsions in OCD that can lead to injury and physical pain.

In other cases, pain appears unrelated to the disorder. Headaches, intestinal issues, and fibromyalgia are just a few examples. Are they connected to obsessive-compulsive disorder? I don’t know, but I do know that having both physical pain and OCD can get quite complicated. For example, if someone has a severe headache, he or she would (hopefully) go to their doctor. The doctor might order a test, such as an MRI, which  would probably come back normal. The person’s headache subsides, and life returns to normal.

That’s if you don’t have OCD. If you do have OCD, you might feel reassured immediately after the results of the MRI, but then the obsessive thinking might kick in:

How can I be sure the test didn’t miss something?

I tripped the other day and have been more forgetful than usual. I must have a brain tumor.

Maybe the doctors got my test results mixed up with someone else’s?

As you can imagine, this list is endless. Compulsions to temporarily quell this anxiety might include going back to the doctor, asking a loved one for reassurance, or being hyperaware of every “symptom” you feel. All of these rituals only serve to make the OCD stronger.

Nothing is simple when it comes to OCD.

In an interesting study related to OCD and pain, researchers found that study participants with obsessive-compulsive disorder were actually unusually tolerant of physical pain, regardless of the nature or severity of their symptoms. The scientists believe these findings suggest that individuals who struggle with emotional pain are able to endure physical pain to a much greater extent than others. In a nutshell, it appears the physical pain distracts from the emotional pain. This finding can perhaps give us somewhat of an understanding of the role of self-injury in OCD.

Pain and obsessive-compulsive disorder appear to be connected in different ways. As I mentioned at the beginning of the article, however, when OCD is properly treated, some symptoms of pain might diminish, or disappear completely. Another great reason to get proper treatment and fight OCD.

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ERP Therapy – A Well-Guarded Secret?

secret

by stuart miles freedigitalphotos.net

OCD Awareness Week has come and gone and there were many successful, informative events to help all those whose lives have been touched by obsessive-compulsive disorder. I think the IOCDF always does a great job with its programming.

There was also attention paid to OCD through the national media, though I’m not sure if the two shows I watched/listened to were broadcasted because of OCD Awareness Week. While I think the productions both did a good job debunking the myths of OCD and illustrating what the disorder is all about (as much as you can without actually having OCD), I believe they were sorely lacking in one extremely important area – treatment.

The first show was a podcast sponsored by American Public Media. Six people with OCD recorded their thoughts and feelings throughout the course of a day, giving the listener an idea of how OCD operates. I think it was a great idea. But I kept waiting for the host of the program – or anyone – to inform us that, if you have OCD, you do not have to be controlled by it – it is treatable. While I realize that treatment was not the focus of the podcast, I also believe that not saying anything about recovery leads people to believe “that’s the way it is,” and there is no treatment for the disorder. I wasn’t asking for a lot. One sentence saying, “OCD is very treatable” would have satisfied me. But there was nothing. NOTHING! I think one of the six people with OCD might have used the word “Prozac” once in passing but that was it.

The second event was a segment of 60 Minutes with author John Green (The Fault in Our Stars, Turtles All the Way Down). John has obsessive-compulsive disorder, which is the subject of his novel Turtles All the Way Down. What an inspiration he is to everyone (young people in particular) with OCD! When asked what he does to help himself, I believe his only answer was “exercise.” I don’t know what type of therapy, if any, Mr. Green has tried, but again, I was still hoping that at some point during the broadcast the interviewer would throw in at least one sentence: “OCD is treatable.” But sadly, again, nothing.

I believe these firsthand accounts of living with OCD are invaluable. I really do. But when you (or a loved one) are suffering from this potentially devastating disorder, the only question you’re likely asking is “How can I get better?” I believe we are doing a poor job of answering this question.

Ten years ago my son Dan suffered from severe OCD. As my book jacket says, “he went from seven therapists to ten medications to a nine-week stay at a world-renowned residential program.” I believe exposure and response prevention (ERP) therapy saved Dan’s life, but finding this treatment was difficult. I became an advocate for OCD awareness and proper treatment precisely for this reason – to let others know that ERP therapy is the evidence-based, first-line psychological treatment for OCD as recommended by the American Psychological Association, and to spread the word that OCD, no matter how severe, is treatable.

Ten years later, for reasons that I just can’t fathom, this therapy still seems to be a well-guarded secret.

 

 

 

 

 

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An Exciting New Resource!

Boy in School

By Paul Gooddy, Freedigitalphotos.net

If you’ve been following my blog for a while, you might remember that I’ve written several different posts regarding obsessive-compulsive disorder and school. In this post I talk about how important it is for teachers and other school personnel to at least have a basic understanding of OCD:

Imagine this scenario: An eight-year-old distraught girl musters the courage to confide in her teacher that she fears she might seriously harm her classmates. She arranges the items on her desk in a particular manner to keep anything horrible from happening. The teacher, alarmed, follows her school’s protocol, and before you know it, the “authorities” are involved, the girl is traumatized, her parents are upset and confused, and goodness knows what else happens.

Now imagine this same scenario, except the teacher in question has a basic understanding of various brain disorders, including OCD. After asking the girl a few questions, it is obvious to the teacher that this child is terrified of her obsessions, has no desire to hurt her classmates but rather desperately wants to keep them safe, and organizes her desk compulsively to make sure everything is “all right.” The teacher arranges a meeting with the appropriate counselors, as well as the girl’s parents, a referral to a therapist who specializes in treating OCD follows, and official diagnosis and treatment begins.

What a difference education can make!

For this reason and more, I am excited to announce that the International OCD Foundation has launched a new resource: Anxiety in the Classroom.

From their website:

Anxiety in the Classroom is an online resource center for school personnel, students, and their families.
This website provides general information, resources, and materials about anxiety and OCD as they relate to the school setting, as well as more specific tools for teachers, administrators, and other school personnel who may work with students with anxiety and/or OCD. Parents and students will also find tools and information to help them advocate for school accommodations, as well as to educate their teachers and classmates about OCD and anxiety.

How great is this! While the parent section and the student section of the site have not yet launched, the school system section is up and running and I am so impressed with the comprehensive information and resources included on the website.

Congratulations to the IOCDF on a job well done and I can’t wait until the site is complete in 2019. School personnel, parents, and students will now have easy access to much-needed information about OCD and anxiety.

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And The Winners Are……..

Overcoming OCD A Journey to Recovery

Happy OCD Awareness Week to everyone, and I hope you’re planning on taking part in some of the great events planned for the week.

I’m happy to report that the results of my book giveaway are in and three winners have been randomly chosen to receive a signed copy of Overcoming OCD: A Journey to Recovery. The winners are:

Morgan (My OCD Voice)

Stephanie

Ashley Gage Owens

Please email your mailing address to me at ocdtalk@yahoo.com.

Congratulations to the winners and thank you to all who entered!

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Atypical Symptoms in Pediatric OCD

stressful reading

In over ten years as an advocate for OCD awareness, I have seen little improvement in the understanding of what OCD really is. While it can be annoying when the general public doesn’t “get it,” it can be downright dangerous when the lack of understanding comes from healthcare professionals.

We tell parents of children with OCD to connect with OCD specialists (of which there is a shortage, but that’s for another post), but first they need to know that their children have OCD.

It shouldn’t be that difficult to get diagnosed, should it? Typically, clinicians who want to rate the severity of obsessive and compulsive symptoms in children and adolescents use the Children’s Yale Brown Obsessive Scale (CY-BOCS) checklist. This tool can be extremely helpful for clinicians, especially in diagnosing more “straightforward” cases of OCD. Still, many cases of childhood OCD continue to be undiagnosed or misdiagnosed.

In a July 2018 article published in Comprehensive Psychiatry titled “Atypical symptom presentations in children and adolescents with obsessive compulsive disorder,” the authors detail two distinct types of atypical OCD symptoms found in 24 children and adolescents. They explained how these symptoms are part of a larger clinical picture, not a feature of an alternate condition such as psychosis or autism spectrum disorder, as sometimes thought. As explained here:

Twelve of the children had obsessions rooted in a primary sensory experience (such as auditory, olfactory, or tactile) that they found intolerable and which was sometimes linked to specific people or objects. To soothe or avoid the associated sensory discomfort, patients were driven to engage in time-consuming repeated behaviors. Many of these patients struggled with ordinary activities such as eating or wearing clothing and can be at risk of seeming to exhibit symptoms of autism spectrum disorder, especially when the patient has a level of self-awareness that leads them to conceal the obsession behind the behaviors.

The other 12 children had obsessions rooted in people, times, or places they viewed as disgusting, abhorrent, or horrific, and which led to contamination fears connected to any actions or thoughts they saw as related to these obsessions. These kinds of contamination obsessions could result in concrete contamination concerns but more often resulted in abstract, magical-thinking fears of specific, highly ego-dystonic states of being. When the fear was a reaction to a particular individual or individuals, the obsession most often resulted in avoidance behaviors designed to placate a fear of acquiring a characteristic or trait of the individual by contagion. Patients exhibiting these symptom presentations are at risk of being diagnosed with psychosis.

In a different case study a ten-year-old boy was misdiagnosed with schizophrenia and put on an atypical antipsychotic, which only exacerbated his OCD. What I find particularly heartbreaking about cases such as this one is the fact that atypical antipsychotics (in this case aripiprazole) have been known to exacerbate the symptoms of OCD. How many children are misdiagnosed and never receive a correct diagnosis?

Obsessive-compulsive disorder is complicated and I have connected with a number of people whose family members (or they themselves) have been misdiagnosed with autism spectrum disorder, schizophrenia, and even Bipolar Disorder. As we see, these misdiagnoses can have devastating effects on the person with OCD, not only because proper treatment is delayed, but because therapies used for other disorders can make OCD worse.

Health care professionals need to be better educated about OCD, so at the very least, it will be on their “radar screen” when evaluating patients. Obsessive-compulsive disorder has the potential to destroy lives, but it is also very treatable – once you know you have it.

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International OCD Awareness Week and Book Giveaway!

awareness

by stuart miles freedigitalphotos.net

October 7-13, 2018 is International OCD Awareness Week. The IOCDF and its affiliates across the country are sponsoring all types of programs, events, and celebrations. Some will be educational and informational, while others will focus on raising awareness of OCD (check out the Mental Health Advocacy Capital Walk). In addition, there will be training programs for professionals as well as lots of events through social media! Take a look at this link to see what’s happening and how you can get involved.

In honor of International OCD Awareness Week, I will be giving away three signed copies of my book, Overcoming OCD: A Journey to Recovery. Originally published in January 2015, the paperback version was released in  November 2017:

OvercomingOCD4

To enter the giveaway, just leave a comment on my blog by Sunday, October 7, 2018. I will then randomly choose three winners and announce the results on my blog.

Good luck to all who choose to participate!

Posted in Mental Health, OCD | Tagged , , | 12 Comments

Where are the Obsessions?

close-up of woman

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

While I believe some progress has been made in terms of OCD awareness and understanding, I also think we still have a long way to go. Quite often OCD is still very much misunderstood by the general public.

Why is this? Certainly misrepresentation of the disorder in the media plays a big part in this lack of understanding about OCD. Unless your life has been touched somehow by obsessive-compulsive disorder, you are unlikely to truly grasp what the disorder entails.

I was recently thinking back to when my son Dan first told me he had OCD. I knew as much about it at the time as most people who had no direct experience with it. As I’ve shamefully admitted before, my initial response to him was, “Really? But you never even wash your hands!”

Aha. What I was focusing on, and what I think those who know little about OCD pay attention to, are the “compulsions” part of the disorder. In many cases, this is the concrete part of OCD; the stuff you can actually see. (I say “in many cases,” because sometimes, as in Dan’s OCD, compulsions are not visible. This is sometimes referred to as Pure O.) Washing hands, picking up twigs, tapping the wall, checking the stove, flicking the light switch on and off. This is where OCD gets its “cute and quirky” reputation, from these observable compulsions. So an outsider looking in might think,”Sure, it’s a bummer that he has to check his stove twenty times before he leaves the house, but it’s not really such a big deal.”

Of course, those of us who know more about OCD realize these noticeable compulsions are only part of the story. It is the obsessions, the crippling fears that drive those with OCD to perform compulsions, that torment them. The anguish that those with OCD feel varies but it can be so bad that it has the potential to totally disable them. And while we can educate people about obsessions and even give them lists of common ones, you still can’t see them. If you have a loved one with OCD or are a professional who works with people who have OCD, then you have likely witnessed the devastating effects of the disorder. The general public has not, as those with OCD are adept at hiding their pain.

As we continue to advocate for OCD awareness, I think it’s our responsibility to differentiate between what OCD really is as opposed to what most people think it is. Only then can we hope to enlighten others who might then think twice about saying “I’m so OCD.

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