The Loneliness of OCD

by stuart miles freedigitalphotos.net

by stuart miles freedigitalphotos.net

The next few weeks are going to be very busy, as I try to spread the word to as many colleges and universities as I can about Overcoming OCD: A Journey to Recovery. I’ll be sharing some of my older posts during this time and will be back with something new toward the end of July. I think the post below, which first appeared in October 2012, is fitting as we prepare for the IOCDF Annual Conference in Boston this summer:

My friend Sunny once left a comment on one of my posts: “The symptoms of OCD are often so humiliating that you will do almost anything to hide them….If no one around you notices what you are going through, then there is no one to encourage you to get help even though you may need it desperately. It can be such a lonely illness.”

Such a lonely illness. Those words ring true and pierce right through me. Thinking back to when Dan’s OCD was severe, especially before he received proper treatment, I know he felt incredibly alone. How could anybody possibly understand or relate to what was happening to him?

In this article by Dr. Jeff Szymanski, he explains how even those with OCD often have trouble relating to others with the disorder:

Even in a facility dedicated to individuals with OCD, they would stare at each other in astonishment as they explained their behaviors to each other: “You do WHAT? Don’t you know that is crazy?” I get that it is hard to understand what someone with OCD actually goes through — even people with OCD have a hard time being empathetic with each other!

It is not only those of us without OCD who have a hard time making sense of the disorder; it can even be difficult for those who have OCD to understand somebody else’s “tailor-made” obsessions and compulsions. More loneliness.

That’s one of the reasons it is so important to keep sharing. At the last IOCDF Annual Conference I attended I heard conversations such as: “Oh, you’re kidding me, I do that too,” and “You’re the only other person I’ve ever met who…” The first person OCD blogs I follow are  filled with similar comments. The more we talk about OCD, the less alone everyone will feel.

And I’m not just referring to those with OCD. I’m talking about their loved ones as well. I’m talking about me. When I had no idea how to help Dan, or even where to turn for assistance, I felt so alone.

I know now that I am not alone, and Dan is not alone either. Having obsessive-compulsive disorder is hard enough without the feelings of isolation that come with it. So let’s keep talking and blogging and coming together. OCD is nothing to be ashamed of or embarrassed by. If we unite against the tyrant that is OCD, we can, at the very least, end the loneliness.

Posted in Mental Health, OCD | Tagged , , , , , , , | 13 Comments

Happy Father’s Day

by keerati freedigitalphotos.net

by keerati freedigitalphotos.net

Happy Father’s Day to all the dads out there and I hope you are able to spend the day with those you love. I’d like to share a post (non-OCD related – a rarity!) in memory of my dad that I wrote back in April 2010…..

My heart was pounding and I couldn’t breathe. I stared at the watch. 8:15 .  I took out my cell phone to compare.   8:45. “You forgot to wind it this morning,” I told myself. Deep down I knew that I indeed had wound it, but I put my thumb and index finger on the stem and tried to wind the watch again. No movement at all – it wouldn’t budge.  I stared intensely at the tiny second hand, willing it to move with my eyes. Nothing. I broke out into a sweat.  Please, please don’t be dead. The same thought I had nine months earlier when I sat by my father’s bedside as he left this earth.

This tiny part of my father had kept ticking, staying alive for months after he died. Time kept moving. It would have been comforting if his watch had stopped on the anniversary of his death, or on his birthday, or my birthday, or anybody’s birthday….anything with a connection. But that was not the case. It stopped randomly on April 7, 2010.

Dad wore this watch for fifty-five years. Yup. Fifty-five years. My mother had given it to him for a college graduation gift and the only times I ever remember him not wearing it were when he was in the hospital. Even then the watch stayed wound, ticking faithfully, patiently waiting to return to where it belonged, on my father’s wrist.

At some point during their marriage my mother bought my father a newer, more modern watch. You know, the ones with a battery that you don’t have to wind. It stayed in his top drawer, under his socks, because he loved his other watch so much, and saw no reason to trade it in for a newer model.  Mom never seemed to really understand why.

I understood. That was his watch. Full of years and meaning and memories and nostalgia and, well… time.  I wore my Seiko watch, my high school graduation present from my parents, for twenty-five years until it died. We never had a lot of money growing up and it was, by far, the most expensive gift I had ever received. That wasn’t why I wore it every day, though. I wore it because it was a part of me, it had meaning, and together we had our own memories, our own history. Same as Dad and his watch. As long as that watch kept ticking, a part of Dad was still alive. Now it is dead and I am mourning once again.

You see, this just happened this morning. As a matter of fact, I am still wearing the watch. Every single morning after Dad died, I carefully wound the watch and put it on. I loved feeling the flat steel back of the watch on my wrist, thinking that it had also touched my Dad’s wrist for fifty-five years.  That same warm leather strap that hugged his wrist was now hugging mine. I don’t want to take it off. Once I take it off, that’s it. I’m not going to put a dead watch back on again. I find myself staring at the watch every so often, hoping that it is still not frozen at 8:50 AM, the time that I had reset it to when I realized it wasn’t ticking. Kind of like a one last ditch attempt to save it. I had thought that maybe if I reset it, it would start ticking again……like bringing someone back to life with electric shock. It didn’t work.

So I will wear it for the rest of the day. Then I will put it to rest, this watch that was so much a part of my father. It told him when it was lunch time, and when it was time to leave work so he could go home, eat, look at the watch again, and head off to his night job.  It told him when his favorite radio or TV show was on. And it was there with him for so many monumental events.  I imagine him glancing at it every few minutes while he was pacing at the hospital, waiting for his first child, my brother, to be born. Then again with me. He was wearing this watch when his parents died, when his children got married, when his grandchildren were born.  He was wearing it when he was diagnosed with cancer…….twice. He would look at it anxiously many times, as he waited for doctor’s appointments or test results. The watch kept ticking, but now time had taken on new meaning.  It was oh so very, very precious.

My mom and my husband both said the same thing to me, as I choked back tears while telling them of the watch’s demise. “I bet it can be fixed,” they said. But it is not mine to fix. It is Dad’s watch and I don’t think he would have had it fixed either. It has lived its life and now it is time to let it go. Even though it is really, really hard.

At least I have my memories.  One of my favorites is of Dad sitting on the sun porch at my parent’s cottage in New Hampshire.  Dad loved this spot, where he could watch the magnificent sunsets over the lake. He would often look at his watch and announce the time. That’s just how he was. “Sunset, 7:58 PM” he would say with a satisfied smile. Another completed day.

So time has stopped, yet still marches on. How could that be? I am grateful that a small part of my dad lingered on with me for a while, helping me through these tough months.  But tonight, when I take off the watch, I know it will be time to say good-bye. To both of them.

Posted in Mental Health, OCD | 11 Comments

Secretly Debilitated by OCD

by stuart miles freedigitalphotos.net

by stuart miles freedigitalphotos.net

A version of this post originally appeared on my blog in October 2012.

I’ve written before about the severity of my son Dan’s obsessive-compulsive disorder. How it was so bad he couldn’t eat. How he’d get stuck sitting in one particular chair, hunched over with his head in his hands for hours at a time. How he was tied to the clock for all activities of daily living. I’ve always found it amazing that even though things were this difficult for him the last few weeks of his freshman year in college, he still attended classes and managed to successfully complete the semester.

After connecting with many people who have OCD over the last few years, I’ve come to realize that Dan’s ability to continue on with his life is not that unusual. Of course, everyone’s circumstances are unique, but it seems to me that many people who suffer from severe OCD still get up in the morning and either go to school, work, or run a household. They are incredibly brave, doing this while often dealing with non-stop obsessions and hours and hours of compulsions. And while they may seem okay to the outside world, inside they are truly tormented.

Maybe this is one of the reasons why most people don’t realize how serious an illness OCD is. While inaccurate media portrayal definitely plays a role in this misunderstanding of OCD, the fact that so many of those with the disorder mask their suffering so well might also be a factor. Not surprisingly, many people believe if a person can get up and go to work, then their mental health can’t be “that bad.” However, this is a false assumption. The truth is that being able to function does not mean someone is not suffering from severe mental health issues. Even if someone with OCD has visible compulsions (a need for symmetry at work, for example), what is obvious is their “quirky behavior,” not the depth of their pain. That often remains hidden.

Whether in the workplace, school, or home, many people still believe OCD is “no big deal.”  This lack of understanding can be especially detrimental to those seeking accommodations, or at the very least, understanding. So we have yet another reason to continue advocating for OCD awareness: Things are not always what they seem. Those with OCD are often severely debilitated; you’d just never know by looking at them.

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

Evaluate your ERP Therapy

by stuart miles freedigitalphotos.net

by stuart miles freedigitalphotos.net

I believe one of the most difficult aspects of obsessive-compulsive disorder is finding the right treatment. Evidence-based exposure and response prevention (ERP) therapy, a type of Cognitive Behavioral Therapy (CBT) is the first-line treatment for the disorder, and it works. Yet so many people, including therapists, have never even heard of ERP. I am doing my best, along with other advocates for OCD awareness, to spread the word.

But knowing that ERP therapy is what you need is only half the battle. The other half is finding a good therapist who is properly trained in ERP and really knows how to utilize it correctly. Imagine thinking you are getting good ERP therapy when in actuality you’re not. You wonder why you’re not getting better; after all, ERP is supposed to work. Maybe you’re even feeling worse. You worry that your OCD is not treatable. After all, ERP is the gold standard for treating OCD. You lose hope.

So how do you know if you are getting good ERP therapy?

In this wonderful article, Finding the Right OCD Therapist, we are given some great suggestions on how to find a good OCD therapist, including questions to ask and things to look for in a health-care provider. What I think is particularly helpful is the last section of the article which lists some ways to evaluate the effectiveness of your ERP therapy. We are told that good OCD therapists:

  • Collaboratively create hierarchy items.
  • Collaboratively choose exposures and agree on specifics. A therapist should not force you to complete an exposure.
  • Individually tailor treatment for you. Even standardized treatment is not a one size fits all.
  • Do not provide reassurance that will temporarily reduce anxiety and interfere with natural habituation and learning.
  • Identify covert rituals that get in the way of progress, such as mentally reassuring yourself, mentally undoing/neutralizing the exposure, distracting, or counting silently.
  • Get at the core fear. Choose exposures at the top of the hierarchy that go “above and beyond” to fully target core fear, without being truly unsafe, harmful, or outside of what is accepted in your culture or religion.
  • Help you grow into the role of becoming your own therapist.

When my son left his intensive residential treatment program we connected with a therapist who told us he specialized in treating OCD with ERP therapy. Once we heard that, my husband and I didn’t ask any questions or request any specifics about his approach. I realize now how incredibly lucky we were, as this psychologist turned out to be an excellent therapist with extensive experience using ERP. Of course, not everyone is so fortunate.

If you are in the process of looking for a therapist, or things aren’t going well with your current health-care provider, please take a few minutes to look at the above-mentioned article. It could help steer you in the right direction – toward the road to recovery from OCD.

 

 

 

 

Posted in Mental Health, OCD | Tagged , , , , , , , , , | 7 Comments

“Overcoming OCD: A Journey to Recovery” Goes to College

high res photoI’m happy to report that our book, Overcoming OCD: A Journey to Recovery will be required reading for a Fall 2015 General Psychology college course. The professor feels it will be a valuable addition to her curriculum.

I’m excited to get the word out that OCD, no matter how severe, is treatable. I’m even more excited that the potentially budding psychologists reading the book will learn what the proper treatment entails. And who knows? Maybe a few of these students are struggling with obsessive-compulsive disorder themselves, or know someone who is, and the book will hopefully benefit them personally.

At the very least, I hope our family’s journey helps students better understand OCD, and acts as a springboard for discussions about mental health treatment in general.

If you are a professor or are connected with a university in any capacity, or would like to see the book used at your alma mater, or just want to help spread the word, feel free to contact me at ocdtalk@yahoo.com. If you’d prefer, you can pass this flyer, Overcoming OCD A Journey to Recovery along to the appropriate people. Professors considering using the book in their classes can receive a free eBook exam copy.

Thanks to everyone for your continued support as we work to get the truth out about OCD!

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

OCD and Who You Really Are

pensive manI was recently reading Ellen’s OCD Blog, and in her response to a mom whose son has severe OCD, Ellen says, “…what kept me going is knowing that people cared, that people could still see who I truly was, even when I couldn’t.”

This comment resonated deeply with me, and in many ways, sums up much of my family’s journey. I’ve previously written about our son’s stay at a residential treatment center, and how my husband and I felt left out of all aspects of our son’s care there. This, of course, brought up a host of concerns, perhaps none more troubling than the fact that the staff there really didn’t know our son. How could they? They met him in the worst condition of his life, consumed by obsessive-compulsive disorder, a shell of who he really was. They knew how to treat OCD, but they didn’t know Dan. I don’t want to get into all our issues here, as I’ve written a few posts on this topic already, but you can certainly check some out if you are interested.

What I find so powerful about Ellen’s comment is that it comes from a person with OCD. It seems so obvious now, but I don’t think I have ever really tried to look at the impact of our involvement from Dan’s perspective. Of course we all know having encouragement and help are of the utmost importance for anyone who is struggling. But to have the love and support of those who know you best, of those who know who you really are, before OCD took over your life, has got to be a huge source of comfort. While he might have felt lost while in the throes of severe OCD, perhaps it was a little easier to bear just knowing that his family knew who he truly was, and that we’d do everything we possibly could to bring him back to himself.

I hear comments all the time: “I don’t recognize my son.” ” “My daughter used to (insert all wonderful things here) and now all she does is (insert negative things here).” “My wife was an awesome mom and now she won’t even go near our daughter.”

It is so difficult to watch those we love turn into people we don’t know. But, really, that’s not what’s happening. Our children, our spouses, our parents, are all still themselves, under the mess of OCD. We need to keep reminding ourselves of this fact, and more importantly, remind them of it as well. We need to let our loved ones with OCD know that we know who they truly are, and that they will be back.

 

 

 

Posted in Mental Health, OCD | Tagged , , , , | 13 Comments

Raising Awareness of OCD

 I'm Blogging for Mental Health 2015.

Today is Mental Health Month Blog Day, and I’d like to share a couple of  things with you:

First, Seth and I were recently interviewed on Voice of America’s One Hour At A Time.  If you’re interested you can listen to the podcast here.

Also, Ellen, over at Ellen’s OCD Blog, created this short video called Ritualise. I think she did a great job, and I hope you’ll check it out.

These are just two of the many examples out there of people working hard to get the truth out about OCD!

 

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