OCD and the Importance of Specialists

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The voice on the other end of the line is searching for an answer. She knows there is another way. There has to be. I’m speaking to a woman. I don’t know her age. I only know that she’s self-diagnosed with OCD and she is looking for help. Her plea to me draws me in; this is what I’m passionate about: helping people with OCD find help and get better. At the same time, the call leaves me furious. Something inside of me demands, “Something must be done about this!

A little background. I am the parent of a young adult with OCD. I am also a clinical psychologist. Several years after my son’s OCD diagnosis and successful treatment, I sought out training and began to specialize in the treatment of OCD. I did not want other families to go through what we did. Heck, I was a psychologist and I had had no clue about OCD. I’d been lucky to find help through my psychology connections. How were people without a psychology background to know the “what’s,” “why’s,” and “how’s” of OCD?

The Woman on the Line

The woman I’m speaking to is resourceful. She’s figured out that there’s a name for the disturbing thoughts that go through her mind, and for the anxiety and discomfort created by them. It’s called Obsessive-Compulsive Disorder. She is troubled by fears that she will harm herself in some way. She does not wish to harm herself. The thoughts terrify her. She wants to learn to deal with them in a better way, rather than spending great amounts of time ruminating. What she describes to me sounds a great deal like a theme that the OCD community has dubbed “Harm OCD.” It’s a fairly common OCD theme.

“I wanted to use my health insurance,” she tells me. “I went to see a therapist who wasn’t an OCD specialist, but he seemed professional enough.”

What followed was anything but a pleasant experience. When she told the therapist that she believed she had OCD and that her obsessions centered around thoughts of harming herself, the therapist told her that there was no such thing as the disorder she was talking about. His reasoning? He had never heard of it.

He told me I was suicidal and that the thoughts were just fragmented pieces of myself that I’d disowned,” she lamented.

“Let me guess,” I said. “The thoughts and the anxiety only got worse then.”

“Yes!” she responded with fervor.

“This is a frequent problem we see in the OCD community when people see therapists who are not specialists in treating OCD.”

Our talk continued with me providing resources, referrals, and information on finding a specialist to work with her. I trust that she will get into proper treatment and get the help she needs.

The Uninformed Psychology Community

Being immersed in the OCD community, I sometimes forget that the psychology and psychiatry community as a whole can be misinformed about OCD. Although I have never met this woman to be able to diagnose her, nor was I present to witness what happened in the consultation room, what she describes matches what many with OCD describe on their road to finding diagnosis and treatment. Not all mental health professionals are trained to diagnose or treat OCD. When a person has OCD, it is a specialist they must see.

People trust therapists and psychiatrists to be able to identify what is wrong and to be able to treat them. If their diagnosis is OCD, and if it manifests in a way that does not reflect what tends to be shown in the media, the diagnosis can be missed. What’s more, the treatment provided can end up making things even worse, as this woman shared. When she noted that she thought she had harm OCD and was told that that did not exist, it made her doubt and despair even greater.

What frustrates me is when mental health professionals do not admit that OCD is not their specialty, or when they are not willing to listen to the person in the room with them. A quick search on Google for “harm OCD” led me to over 700,000 results in less than a second. A search for “OCD suicidal obsessions” leads to nearly 300,000 results (my friend, Janet, at OCDtalk wrote an article on the subject last year).

Getting Help

The woman I spoke with was informed. She had done her research and she knew what she likely had. It was her reluctance to go outside of her insurance (or, perhaps better, to stand up to her insurance provider and ask that they approve her seeing an OCD specialist since there are none on her panel nearby) that led her to not getting the appropriate treatment. It’s not that the therapist she saw is not a talented professional; they just were not likely informed about OCD.

If you believe that you, or a loved one, have OCD, seek out a specialist. The International OCD Foundation has published a great article called, “How to Find the Right Therapist.” Both the International OCD Foundation and the Anxiety and Depression Association of America have features to help consumers find therapists. Starting with a specialist can help an OCD sufferer avoid wasted time spent in treatment that does not help. If there are no specialists in your area who take your insurance, you still have options. Perhaps there is a therapist on your insurance who is out of your immediate area, but provides therapy via secure video (they must be licensed in your state and your insurance company may or may not authorize this kind of treatment). Perhaps your insurance company can make an exception and authorize treatment outside of network. Additionally, if finances are an issue, do not be afraid to ask providers if they can provide you therapy at a reduced fee you can afford. There are many who will.

Above all, this is your health and your life. Getting the appropriate treatment is important. Do not stay in a treatment situation that feels inappropriate, or with a mental health professional who does not understand OCD, or who will not look at valid articles you point them to on the subject. OCD is treatable – and getting the right treatment is key to recovery.

 

 

 

OCD is Treatable

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This week, as I was thinking about this blog, it occurred to me that something has been missing from my posts for some time. That “thing” is the notion that Obsessive-Compulsive Disorder is treatable; that there is hope for sufferers, their families, and those who care for them. That OCD is treatable was core to my very intentions behind creating this blog – and I fear that, lost in our situation lately, I’ve forgotten to mention this all-important point recently.

Anyone who is new to this blog may not know the history of OCD in our family. They may not have read my initial post in which I explained that our teenage son, Blake, through participation in treatment, had once lived a life where OCD had become a thing of the past. They may not know that I started this blog as a place to give my emotions and thoughts about our experience an outlet, lest I let them flow in front of Blake, who was refusing treatment at the time. They may not know that this blog began with the eternal hope that Blake, given some space, would decide to return to treatment and beat OCD back into oblivion once again.

I want readers to know that the situation we currently face, one in which our now eighteen-year-old frequently barely functions, is not a typical situation for a young man with OCD. I’m not saying that this does not happen when people do not get treatment. It obviously can happen. Blake, however, besides dealing with OCD, got hit by a tremendous bout of Major Depression – and it took us a while to find a professional who thought he could help even though Blake believed he was beyond being helped. Now we are all in treatment again, and we are peeling back the layers little-by-little with the hope that things will get better again. That is what I’ve been documenting lately.

At the same time, it is important for sufferers, or anyone reading this blog, to know that OCD is treatable. I know this as a mother who has been through cognitive behavior therapy/exposure with response prevention (CBT-ERP) with her son and seen amazing results. I know this as a therapist who has the true honor of watching her patients, young and old, show OCD the door and reclaim their lives. I know this as a reader of many blogs and an attendee at many conferences. People can and do get better from OCD. There is every reason to have hope.

If you continue to follow this blog, you will likely observe our family stumble and struggle. That’s just where we are right now. Yet, I continue to have hope that our son will get better once he can see that there is a light at the end of the tunnel. Thus, our journey continues. Thank you for bearing witness.

To view helpful information about effective OCD treatment, or to see stories about positive outcomes, I’ve listed a few helpful links below:

It’s Always Darkest Before the Dawn

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Just before we leave our latest therapy session, our therapist informs Blake he’s going to use a cliche’. It’s been a difficult few weeks, helping our son tiptoe toward better functioning. First there was getting up each morning at the same time. Next, it was about getting in the shower and getting dressed. Then came the difficult job of convincing Blake to choose an activity for himself – something that would get him out of the house, instead of falling back to sleep for hours upon hours.

In this session, Blake tells the therapist that he plans to apply for a job. It was his task since our last session to decide whether he wishes to take a college class or get a job. Blake names a local store that piques his interest, and then he does an amazing thing – he looks our therapist in his eye and gives him his word. I gasp silently.

“This is a big deal,” I say aloud.

“I know it is,” says our therapist. “Blake doesn’t give his word easily. I know if he does, he will stand by it.”

I admire that the therapist has picked this up about Blake. It’s a subtle thing that the casual observer would miss, but this therapist, with his many years of treating OCD has picked up that Blake’s scrupulosity, his need to tell exact truths, prevents him from promising or giving his word on nearly anything. (If that seems strange to the reader, I’ll sum it up that Blake’s OCD says he must be a good person and always tell the truth. Because there may be an unforeseen circumstance that may prevent him from keeping a promise or his word, Blake’s ritual/habit/compulsion is to not make any promises).

And then, it is quiet.

Our therapist pauses, strokes his chin, and notes that he’s now in an interesting position.

“There are fifteen minutes until our time is up,” he says, glancing at the clock. “So, you could let me know if there’s something you’d like to bring up, Blake. The alternative, which I don’t know if you’d like, is that I could ask your parents if there’s something they’d like to bring up…”

“Nope. There’s nothing I want to talk about,” Blake says, and looks in my direction.

“Oh, I do have something I’d like to bring up,” I say, somewhat too excitedly.

“What?” Blake wonders.

“You know, you have been sitting up late at night talking to me about how much despair you are in, how life seems to hold nothing for you, how awful you feel.” I look to the therapist and continue. “There are frequent nights of sobbing his heart out. And, as mom, I’m trying to listen, but there’s a limit to what I think I can do.”

The therapist nods and what ensues is a dance around whether Blake will share what he’s been going through with the therapist, whether he might trust him with his sadness, and the time constraints. In the end, Blake agrees he will meet with the therapist alone during the next scheduled session and at least answer a few questions for the therapist. But Blake is doubtful that it will be helpful.

“It’s difficult to imagine that there is any hope,” the therapist notes to Blake, and then, as we walk out the door, offers him what he promises will be a cliche’. “It’s always darkest before the dawn,” says our therapist.

Blake nods.

“See you at dawn,” says the therapist.

Don’t Say It’s Not About OCD

Blake sits in his chair looking intently at the therapist. He’s just begun coming with us to sessions and he’s questioning the therapist’s approach (because, well, Blake knows better than the therapist – or mom and dad).

“I don’t understand why my parents are rubbing a tissue on the dogs and putting it on my bedroom floor if I don’t show up for dinner,” he says. “If they wanted me to come to dinner, they just could have told me.”

Well, actually, we did tell him we wanted him to come to dinner. He just wasn’t making it on time most nights.

“But why the tissue?” he wonders.

“Well…” the therapist starts. “Your parents have noticed that there are some behaviors you have that are related to OCD. And they are concerned about them.”

“What?!” His head swivels in our direction. “You’re concerned about them?! Why didn’t you ever just tell me?! Why did you ever let me leave treatment, then?! Frankly, I see nothing wrong with what I do. Dogs are not cleanly and it’s disgusting to have anything from them in my room!”

Well, actually, we did tell him we were concerned about his behaviors and that we encouraged him to be in treatment, but he refused.

As the conversation heightens, the hubby starts to get antsy. He steps into the process.

“Look, I don’t think the primary issue is your OCD right now, Blake. I think your sleep is a huge issue, and your functioning on a day-to-day basis.”

At one point Blake leaves the room in frustration and our therapist looks at the hubby and I.

“Please don’t say it’s not about OCD,” he asks us, “because I’m not so sure it’s not. Blake has a lot of OCD behaviors that he thinks are normal. I don’t want to normalize those and have him think they aren’t a problem.”

When we leave the room, I begin wondering about what our therapist said. Other professionals have pointed to Blake’s depression in recent years, not so much to the OCD. What is he seeing? So, I observe, and I begin to notice what I’ve stopped seeing in the past four years:

  • Walk into bathroom, wash. Walk out. Walk back in. Wash again.
  • Open car back door. Seat is too dirty. Sit up front.
  • “Mom? What is that on the floor?”
  • “Mom? What is that in the box?”
  • “Mom? Is that color normal?”
  • Open car back door. Seat still too dirty. Sit up front.
  • Say prayer. Pace. Say prayer again.
  • Carry squirming cat downstairs, while holding said squirming cat as far as arms will extend away from you.
  • Open car back door. Seat still too dirty. Get a towel and clean seat before sitting.

Blake’s OCD is still very much there. It’s just been quieter. And he’s accepted it as normal (at least he seems to have). How is it connected to his deep, deep depression? That will be an answer we will have to watch unfold.

 

Well-Intended Advice

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“Why did you do that? You’ve taken the only thing he had to care about.”

A friend I haven’t seen in a while is trying to convince me that the hubby and I have made an awful mistake by not allowing our son to go off to college in another state this fall. She faces me as we stand at a reception amidst hundreds of people. I feel that feeling in the pit of my stomach – the one that comes when this wasn’t the response I was expecting.

I try to gather myself back together to explain the “why,” but I can’t seem to make any sense to her. I decide to give up trying to explain to my friend the intricacies of our situation.

“Maybe we did make a mistake. I hope not. We made the best decision we could.”

I disappear into the crowd when someone else appears to talk to my friend. I shuffle around, weaving through the others, searching for my hubby. I want to go home. I feel lost and misunderstood.

Making Tough Decisions

My youngest son, Blake, has been struggling with depression for at least two years now. He’s up all night. He sleeps all day. He has little he looks forward to. He also has OCD, which I thought had become a minor issue until we began therapy as a family recently. Blake was accepted this past school year to his first choice college – a small, extremely demanding school without dorms or a meal plan, where he will have to live in an apartment with at least three others and navigate his way to school and around the city.

Although we celebrated his acceptance to the school, the hubby and I were deeply concerned how Blake would go from struggling with his mood and needing constant support to finish high school to functioning in this challenging environment. We spoke with him repeatedly about how important it was to start new habits now, long before he went away, so that he would be ready to function far away from home. He said he wanted to work on it. As a family we implemented schedules, made sure he was reinforced for positive steps, engaged his school’s and his psychiatrist’s assistance, and utilized tools to help with the whole process.

It didn’t work. Things got worse. We asked Blake to get help from a therapist. He balked at this over and over.

“What good will that do? The only person who can help me is me. It’s a self-discipline problem,” Blake told us.

Finally, we had to tell him that we just couldn’t send him to school this fall. We asked him to take a deferment. It was one of the toughest choices we could have made. We wanted him to go. He claimed it was the only thing that he cared about in life. And, yet, his behavior said it was going to be a disaster. Our new family therapist, a veteran in working with extremely tough cases, wondered why we hadn’t made that decision sooner. Why? We didn’t want to break his heart. And, indeed, when we delivered the news, Blake cried for days.

Giving Advice

When my friend wandered up to me at the event and wanted to know how Blake was, I just figured she’d understand that we’d looked at every other option before deciding to ask him to wait a year. I figured she’d know the amount of soul searching the hubby and I had to do, and how much courage it took to make the decision and stand firm – and then to stand back and watch our son’s devastation as he refused comfort from us.

Instead, she admonished me for having made that decision.

“You took away the only thing that mattered to him. You should have let him go. He might have surprised you and risen to the occasion.”

Sure. He might have. Don’t you think that the wish that kept us from making the decision sooner was that he would show us he could do it?  He’s struggling with mental illness. He can’t force himself to function. If he’d been able to, he would’ve shown us that he could do what was needed when we told him that school next year was on the line. He has work to do first. He has to get healthy.

I know my friend’s advice was well-intended. I know she has my best interests at heart, and Blake’s, too. I also know she had to make a tough decision about sending her own young adult child back to school.

Hearing this unexpected response from my friend has toughened my skin a little bit. It’s made me realize that I have to be firm in the decisions our family makes and recognize that others won’t always understand the in’s and out’s of those decisions. It’s made me recognize how important it is not to judge the decisions others make for their families. And it reminds me the importance of not offering advice unless I’m asked. I love my friend, but her reaction still stings a bit – and it’ll just take time for that to fade. In the meantime, our job is to keep working in therapy and applying what we are learning every day.

Fingers crossed that Blake will be ready to head off to school in Fall of 2018!

“You’ve Hired a Dog Trainer!”

Blake is furious. Yet, he’s remarkably composed at the same time.

“You’ve hired a dog trainer! I won’t take this anymore! What’s the therapist’s phone number?”

I give him the number and Blake calls the new therapist that the hubby and I have been seeing to help us work on getting Blake moving toward functioning. Our boy has been spending all day in bed and all night up doing who knows what. I see him for dinner and before I go to bed. He has few activities. He’s miserable.

Blake gets the therapist’s voice mail system. He leaves a message saying he doesn’t agree with what the therapist has his father and I doing. Blake suggests we all need to meet to talk this over.

Why Hasn’t He Called?

Nearly a week has passed and Blake has grown impatient. The therapist has not responded to his voice message.

“Why hasn’t he called back?” he wonders.

I have my suspicions. Blake rejected therapy when we brought him in to see this therapist. Now the hubby and I are the patient – in a manner of speaking. I imagine the therapist wants to talk to us first. We’ve been slowly implementing increasing demands on Blake. Each comes with an unpleasant consequence that targets his OCD if he does not participate. He’s gotten furious with each new step, but he’s been complying.

When the day of our appointment arrives, Blake demands to come with us.

“You’re welcome to come,” I tell him. “I’m sure the doctor will want to talk with Dad and I first. You might be invited in. You might not.”

“I’m willing to take that risk,” he says.

The Appointment

We arrive at the appointment and the therapist, the hubby, and I talk this over.

“Let’s see what he has to say,” the therapist says. “If he is willing to work with us, then we will have him stay. If he just wants to try to keep things the same, then we know he’s not ready to participate.”

He invites Blake in. Blake begins in a composed way, but he’s angry and he loses his temper. The therapist observes that our family spends a great deal of time going over what the problems are, but getting nowhere. He asks us to agree not to talk about the problems just until our next appointment. The hubby and I agree. Blake is having none of it.

“We have to talk about it! I can’t go a week without finishing this! I can’t! I won’t agree!”

And he storms out.

The hubby and I agree once more with the therapist that he and I will not talk about the problems or about what happened in the session. Blake is outside the building. He refuses to speak at all. He and I take off for home while the hubby goes back to work. Blake is silent for half the 45 minute ride home. Then, he apologizes.

“I’m sorry I exploded in there, Mom.”

“You were upset.”

“I know, but I really didn’t have a good reason to react the way I did. I agree. I’ll wait until next week to talk about things.”

“You’re coming back?”

“Yes. I’ll be there.”

So now Blake is in therapy with us. It’s not something he really wanted, but he wants more control than he’s had since the hubby and I have been going alone. That seems like a good place to start.

The First Step

Recently, after more than three years of Blake refusing treatment for his OCD, and for the depression that ensued later, the hubby and I made the decision to return to treatment. We didn’t give Blake a choice; we just told him we had an appointment with a specialist who might help us all find a way to do things in a better way. He entered the room on his own, but left in a rage after the therapist called us in to plan together (actually, he left when the hubby and I agreed to a plan the therapist had suggested). When Blake refused to return, the hubby and I became the patients, with the therapist directing us on how to shape our son’s behavior.

The first step was for the hubby and I to make a list of what Blake was not doing – where he was falling down in functioning (like sleeping all day and being up all night). We were also to list the things he was doing (for example, serving as a moderator for a special interest website) and, interestingly, what OCD behaviors we saw that he still had. That last part was odd to us. We hadn’t come to therapy to address OCD. We were more concerned that Blake was depressed and was barely carrying out the basic tasks of living. The therapist wasn’t as sure as we were that OCD wasn’t important.

When we showed up with our lists, he took time to review them.

“Let’s start with something Blake can be very successful at, like getting to the dinner table on time,” he suggested. “Now to chose what happens if he doesn’t make it on time. Hmmm… How bothered is he by the dogs?”

“Just a little,” we noted. “He always washes after he touches them, but it’s not like he runs to do it.”

“Okay, how about this? If he is late to the dinner table, you are going to rub a tissue on the dogs. Then you will break it into several pieces and place them on his bedroom floor.”

“What? How is this related to not getting out of bed?” the hubby wanted to know. “Why are we focusing on the dinner table and his dog contamination stuff when we want him to get out of bed?  And how does rubbing a tissue on the dog even relate logically to getting to the table on time?”

“It doesn’t.”

“Then why are we doing it? Shouldn’t the consequence be logically tied to the behavior?”

“Natural and logical consequences haven’t worked with Blake,” he reminded us. “We can’t try the same old thing.”

The hubby wasn’t convinced, but he was willing to give it a try. I was intrigued and kind of confused, but I understood that Blake had been unmoved by the natural consequences that had been coming to him, or any consequences that the hubby and I had employed that were logically connected to his behavior. The therapist wrote the plan down. All that was left was to inform Blake of the plan.

Blake Explodes

Blake was infuriated by this new plan. He didn’t even make it to dinner that night. He went upstairs to his room. He slammed his door and his shutters, and he threw things everywhere. Then he came back downstairs like nothing had happened.

The hubby and I carried out the consequence as directed. We didn’t make a big deal out of it to Blake. We simply quietly wiped a tissue on both our dogs’ fur, then cut it apart into several pieces. Then I went upstairs and placed those pieces on his floor. Blake responded by pouring Nature’s Miracle all over his carpet.

The next night, he showed up to dinner on time. And the next. And the next. And our dinners were actually pleasant. The hubby was still confused about the plan and wrote to our therapist.

Why again are we using Blake’s OCD as part of getting him to come to dinner? It just doesn’t make sense to me.”

Remember, Blake hasn’t been functioning and he hasn’t responded to regular consequences. We are trying to prevent you from having a 35-year-old who hasn’t launched.”

The rest of the week continued without incident. We felt just the littlest bit hopeful. It was a baby step. It wasn’t the big goal we wanted. We could only hope Blake would respond well to what came next.