Should OCD be a Family Affair?

This post originally appeared in 2011:

When my son Dan was first diagnosed with obsessive-compulsive disorder, I wanted details. What was he thinking, how was he feeling, is today better or worse than yesterday? The problem was, Dan would not, or could not, share the details of his disorder with me. He was even reluctant to see a therapist because he thought everything they spoke about would be relayed to his parents. Once I explained “doctor-patient confidentiality” to him, he couldn’t get out the door to the therapist fast enough.

I now realize that Dan was on the right track. I was better off not knowing. His OCD dealt with mostly mental compulsions and therefore was not obvious to me, and while I wouldn’t go so far as to say I had my head in the sand, I certainly had no idea how much he was suffering. I think if I had known, I would have accommodated him incessantly, and my heightened anxiety levels wouldn’t have done him any good.

I wonder how many teens and young (and not so young) adults are hesitant to share details of their OCD with their families, specifically their parents. From the blogs and sites I’ve visited, my guess is: a lot. Why? Is it because family members are just too close to share such personal struggles? Do those with the disorder feel embarrassed or think nobody could possibly relate to what they’re going through? One explanation I have seen often is that many parents minimize the OCD with comments such as, “Oh, I do that too,” or “It’s no big deal, you’ll be fine.” While these statements might be well-intentioned (or perhaps stemming from denial or guilt), this lack of understanding and support can be devastating for someone with OCD.

As with most illnesses or disorders, people with OCD seem to benefit from interaction with others who can truly understand what they are going through: other people with OCD. Social media sites, conferences and support groups for those with OCD are widespread.  So I don’t think family members need to know details of a loved ones obsessive-compulsive disorder if the person with the disorder is unwilling to share. What families really do need to know, however, is how to respond appropriately to their loved one with OCD, as this is essential to recovery. And maybe what those with OCD really need most from their families is what all of us need and deserve: acceptance, understanding, and love.

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“I’m Fine”

by stuart miles freedigitalphotos.net

by stuart miles freedigitalphotos.net

Another updated post from 2011…

My son Dan dealt with mostly mental compulsions, so his OCD was not obvious to me and my husband. In fact, we didn’t even know he had the disorder until he told us. Yet even when we knew he had obsessive-compulsive disorder and could see he was spiraling downward, he would always say, “Don’t worry, I’m fine.”

To this day those two words, “I’m fine,” make me cringe and stop in my tracks. Dan has been doing great for many years now, so you would think I would have moved on, because really, he is fine. For the longest time, however, I would focus intently on his every move, action, and expression, looking for the reassurance I needed to confirm that he indeed was fine. If I had any doubts, then I would ask him how he was doing just so I could hear those two words that caused me so much anxiety.

In a wonderful post about well-meaners (her friends and OCD support system), “Bobs” gives us insight as to what it is like to be worried about constantly, and then gives us some advice of her own. If you or a loved one has OCD, it is a post well worth reading. What rings true to me more than anything is this advice: Trust the person with OCD – especially if they’ve been working hard toward recovery.

I need to remember this, because although Dan used to say he was fine when he was not fine, that was a long time ago. He has changed a lot since those dark days. He has been through treatment, and has matured. Most importantly, he knows himself and his OCD, better than anyone. If at any point he is not fine, he might not tell me, but I am confident he will do what it takes to get well.

As more time passes, I’m getting better. I no longer analyze every move, expression, or comment that Dan makes. I’ve always tried to see him as separate from his OCD, but now that takes little effort, and I often forget he even has the disorder. I can almost hear the words “I’m fine” without cringing, because deep down I know. He is just as fine as the rest of us.

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The D in OCD

by idea go freedigitalphotos.net

by idea go freedigitalphotos.net

This post first appeared on my blog in 2011:

Since we’ve been getting into semantics lately, let’s talk about the D in OCD.  As Dr. Jeff Szymanski, Executive Director of the International OCD Foundation points out in this post, the word disorder connotes an intensity or seriousness. Just think about it. Saying “I’m in a bad mood,” implies something much less severe than “I have a mood disorder.” Likewise, having eating issues or stomach aches is by no means the same as having an “eating disorder” or “digestive disorder.”

The same goes for OCD. Being obsessive, compulsive, or both is not the same as having obsessive compulsive disorder. I like Dr. Szymanksi’s comparison of himself, who he considers to be somewhat compulsive, with someone who has OCD:

When I park my car in the morning and walk away, sometimes the thought occurs to me, “Did I lock the doors?” Though I might feel a little anxious and I might even go back and check the car, I am not suddenly overcome by fears, doubts and catastrophic images. This, however, is the experience of someone with OCD. My doubts and anxiety were minimal to begin with. The thoughts and worries about my car actually go away without me doing anything. Talk with someone who has a diagnosis of OCD. No matter what they do, they are plagued for hours every day, day after day, with unrelenting, crushing anxiety.

This is what so many people fail to understand – how debilitating OCD actually can be.  When Dan was not able to eat, and essentially not able to function, I thought, “Okay, I know he has OCD, but what else is going on here?”  I had no idea that obsessive compulsive disorder could be so crippling.

If those around us don’t understand OCD, how can we expect them to offer the appropriate support? In my experience, most people want to understand, and they want to help. This is why it is so important to educate family, friends, teachers, peers, and co-workers. The D in OCD can be devastating, and the more people realize this, the better off we will all be.

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National OCD Hope Drive

ocd-hope-drive-appeal-nationalIf you’ve been reading my posts for a while, you likely know that one of my main reasons for blogging is to help spread the word that obsessive-compulsive disorder, no matter how severe, is treatable.

So when I was informed about the OCD Hope Drive to collect 100 messages of hope in 30 days, I jumped at the chance to participate.

You can too!

The A2A Alliance and Peace of Mind Foundation are asking those whose lives have been impacted by obsessive-compulsive disorder to leave a 30-second phone message of hope and encouragement for those who are struggling.

If you have a story of hope and would like to participate, please visit this site. It only takes a minute or two of your time,  and your message will surely help many.

Thank you!

 

 

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OCD and Organized Chaos

by stuart miles freedigitalphotos.net

by stuart miles freedigitalphotos.net

This week I’m sharing a  revised post from 2011….

As I said when I first began blogging, I am not an expert on obsessive-compulsive disorder. In fact, sometimes I feel the more I learn about the disorder, the more confused I become.

Latest case in point: Many  people with OCD deal with compulsions that revolve around the need to arrange things in some type of orderly fashion. Maybe certain items need to be lined up or spaced an exact distance apart from each other. Or perhaps there can only be a set number of items visible (usually an even number). This type of OCD is often referred to as evening up OCD. (To prove how not an expert I am, when I first heard this term I thought it referred to OCD in the nighttime!). Evening up compulsions can also include mental compulsions such as counting, as well as other compulsions such as tapping or touching things a specific number of times. So I get it. Order, symmetry, evenness are important to many people with obsessive compulsive disorder.

Then why is disorganization so common in those with the disorder?  One of the first things I said to my son Dan when  he told me he had OCD was, “Why is your room so messy? Isn’t it supposed to be really neat?” My ignorance showing through again. Many people with OCD have unbelievably messy living areas. I’m not talking about hoarders. That’s a whole ‘nother blog. I’m talking about not being capable of keeping your space and belongings in any kind of order.

When Dan was suffering from severe OCD, I saw his dorm room, and that memory still haunts me.  There were papers and artwork, sketchbooks, schoolwork, clothes, art supplies, paint, books, towels, food, and toiletries, all completely covering the floor. He said that once he lost control of the order, he just couldn’t get it back. Is it that his OCD took so much time and energy that there was nothing left for daily living tasks?

For others with OCD the need to do everything “perfectly” leads to procrastination in cleaning. They wait until they feel they have enough time, motivation, and focus to clean perfectly. Chances are that time never comes, and like Dan, the chaos builds.

Another explanation some people with OCD give for not being able to keep their living space neat and clean is the fear of germs. While it might seem counterintuitive (if they’re afraid of germs, you’d think they’d clean up), it makes sense in a convoluted way. Perhaps a piece of food was dropped on the floor while cooking. Now the person with OCD feels that food on the floor is seriously contaminated and won’t touch it, so there it stays on the floor. Before you know it there are “germs” everywhere, and nothing can be cleaned or put back in its proper place.

It’s not hard to see that giving in to OCD’s demands creates the world that those with the disorder are trying so desperately to avoid. They’re deathly afraid of germs, but are now surrounded by them. They crave order, yet are living in chaos. The list goes on.

Thankfully, nobody has to live this way if they are willing to get help. The vicious cycle of OCD can be beaten with exposure and response prevention (ERP) therapy, and the ability to keep a clean home will be just one of the many benefits of freedom from OCD.

 

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OCD and Driving

by khunaspiz freedigitalphotos.net

by khunaspiz freedigitalphotos.net

My son Dan was fearful of driving and hesitant to take driving lessons. Having driven with him a bit, my husband and I could see he was a conscientious, cautious driver and we encouraged him to work toward this important goal, which he did. We didn’t know at the time that he was struggling with obsessive-compulsive disorder.

Whether you have OCD or not, driving can be scary. It’s a huge responsibility, and one mistake could mean the difference between life and death. Every time we get behind the wheel our lives are at stake. When you think about it, it’s a wonder any of us have the courage to drive at all!

When you think about it.

That’s the thing. Most of us don’t think about it. Perhaps some drivers are acutely aware of the dangers of driving, but I think that typically, once we gain experience and build up our confidence, we become more comfortable driving and the worrying dissipates. It might actually become an enjoyable thing to do!

But as we know, when you’re dealing with OCD, life is rarely that simple. As Dan’s OCD worsened, he became more fearful of driving, even th0ugh he already had his driver’s license and some experience. He stopped driving on highways, and would only drive on roads he felt were “safe.” When I commented that he was a good driver and was likely to remain unharmed, he responded with, “I’m not worried about getting hurt; I’m worried about hurting someone else.”

His comment seems to reflect some common fears those with OCD face in reference to driving. They are worried about others, not themselves. “Did I cut someone off and cause an accident?” “Did I hit someone without realizing it?” Hit and Run OCD, as it is known, involves compulsions which might include checking the spot (over and over again) where you think you might have hit someone (and often there was never even another person in sight), watching the news or calling hospitals to see if there are reports of accidents, and mentally reviewing the events leading up to, during, and after the “accident.” Couple these compulsions with the vivid mental imagery those with OCD often experience, and it’s not difficult to get an inkling of the torment those dealing with hit and run OCD might feel.

So they avoid driving. Maybe, like Dan, they start avoiding certain roads and routes. Maybe they restrict their driving to certain times of day, when the roads are less likely to be crowded. As time goes on, OCD places more and more restrictions on where, when and how they can drive, often resulting in them giving up driving altogether. After all, isn’t that the “safest” thing to do?

Thankfully, driving was not a huge issue for too long for our son. He had places he wanted and needed to go and the only way to get there was to drive himself. So he did. OCD didn’t win that battle.

It all comes down to embracing uncertainty and living the lives we want for ourselves. Exposure and response prevention (ERP) therapy can be extremely helpful for those with hit and run OCD, as well as for those without OCD who struggles with driving fears. With the right help, we can all go anywhere we want – literally and figuratively.

 

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OCD and Indecision

choicesI’ve been an advocate for OCD awareness for almost ten years now and while I feel that some progress has been made in the public’s understanding of the disorder, we still have a long way to go. One of the more difficult concepts to get across, I believe, is just how debilitating obsessive-compulsive disorder can be. Maybe because many people, on some level, can relate to some of the more common obsessions and compulsions, they also believe they “know how those with OCD feel.” Perhaps these people are afraid of germs or everything has to be “just so.” But in reality, unless they actually have obsessive-compulsive disorder, they have no idea of the torment those with OCD experience.

One aspect of OCD that I believe falls into this category is indecision. For whatever reason, I seem to be coming across more and more people with OCD (and those with depression as well) who are affected by this issue. But not affected like those of us without OCD. While those of us without the disorder might agonize over important decisions and possibly even lose a night’s sleep, those with OCD might be paralyzed with fear over any decision – large or small.

For example:

Reviewing breakfast options over and over again in your mind, trying to determine the best combination of food to eat. The perfect meal always seems to be just out of reach, so a decision is not made, and the meal is skipped.

Thinking of, praying about, and analyzing the pros and cons of attending a particular event for days on end. Not being able to come to a decision means missing the event, and then the worrying (for days) begins over the repercussions of not showing up.

Deciding what shirt to wear to work and fearing that whatever you choose might lead to someone you love getting hurt (you know it makes no sense, but still, you never know…).
You’re late for work so you grab a shirt and for hours after repeat the phrase, “Nobody will get hurt.” You’re not able to concentrate on anything else for the rest of the day.

In the above examples, avoidance is evident, as is the need for certainty. Perfectionism often plays a role in indecisiveness as well.

It’s not hard to see how lives can almost be destroyed by this level of indecisiveness. I hope these examples have illustrated how indecision in those with OCD differs from “regular” indecision. And while these situations can indeed be debilitating, there is a solution. As I’ve said over and over again, OCD, no matter how severe, is treatable. Addressing cognitive distortions and embracing exposure and response prevention (ERP) therapy are both life-changing decisions that should be easy to make.

 

 

 

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