Which Way From Here?

Sometimes treatment moves along at a snail’s pace – or even seems to go backward

When I began writing this blog five years ago, my son, Blake, was 14 years old and had recently refused treatment for his Obsessive-Compulsive Disorder (OCD). He’d had a relapse over the previous school year and, despite access to terrific treatment from specialists in Exposure and Response Prevention (ERP), he ultimately wanted to do it his way.  I started writing as a way to express what was going on in my head, to document what was happening, and to sprinkle in stories of being an OCD specialist while living at home with OCD.

As time passed, my writing shifted. In many recent posts, I’ve focused on the depression that settled in over Blake, causing my hubby and I to make the decision to ask him to defer enrollment in college so that he might take care of himself and gain some skills. We entered therapy as a family. First, Blake refused to participate, and he launched into 18-year-old sized tantrums – turning over the belongings in his room, slamming doors and shutters – each time we introduced a new expectation that was meant to move him toward improved functioning. Finally, he came to treatment as a participant and even started meeting with the therapist without us. I’ve documented his struggles, our struggles, and his progress.

Now, Blake Turns 19…

In about a week, Blake will turn 19-years-old. I haven’t talked much about his OCD lately because we’ve mostly been dealing with depression. Blake’s sleep schedule became greatly dysregulated at the end of tenth grade. He sometimes slept until 10 at night; he was up until 3, 4, or 5 in the morning. Over this past year, he’s been awake all day most days. This has mostly been due to my waking him each morning if he doesn’t get up with his alarm. It’s something we agreed on with his therapist: no sleeping all day in this house; if you don’t get up on your own, we will wake you up. But that last hurdle, getting up on his own and staying awake, has been a challenge. Sometimes he does it. Sometimes he does not. In recent weeks, there’s been a slide backwards. He hasn’t gotten up on his own, and he falls back to sleep all over the house for great chunks of the day.

In our most recent therapy session, I joined Blake and the therapist and we focused on where things are at. Blake was dug deep into his position that “nothing” will work and, yet, he was unwilling to try anything new. Top that off with an essential element: Blake does not really want to accept that anyone else might know better than him and what his head is telling him. His brain tells him he’s a worthless screw-up and that it’ll never get better – and he listens to it. I will vouch that this young man is not worthless in any sense, but many steps forward that he has taken have been with pressure from others. I cannot recall a moment where he has honestly said, “I need help and I’m willing to allow others to walk me through this.”

Pivotal Moments

I watched as Blake’s therapist, a longtime specialist and pioneer in OCD treatment, dug in himself. I could see the struggle in him as he could see the road my son is headed down. He pointed out the direction Blake might be going in his quest to continue to do it Blake’s way.

“Blake, my sister’s mental health issue was destroying her life. We begged her to get treatment, to do it another way. But she continued to choose to do it her way…and it killed her.” I could sense the anguish in the therapist’s voice as he shared his personal story of losing a family member to refusing to get proper help. It’s kind of amazing when you reflect that the professional in front of you is a human being.

He continued, “It’s clear that coming to therapy once a week isn’t getting you to where you’d like to be. It might be time to think of doing something more. It might be time to think about residential treatment for OCD.”

“How would that help?” Blake asked. “They’d just be doing it for me.”

“It would help to have therapists and counselors and staff around 24 hours a day to help you learn to live differently.”

“It wouldn’t work. They’d just be forcing me.”

“You’re right. It wouldn’t work if you went into it with the same attitude you have. It wouldn’t work if you continued to see it as something others were pushing you to do. It might work if you were to recognize that doing it your way isn’t working and if you surrendered yourself to something new. You’d have to see yourself as worth it.”

“I’d feel like a freak,” Blake said quietly. “If I was so desperate as to go live in a hospital, I’d feel like a freak.”

“Blake,” I broke in, “if J were to check into a residential program for what he’s going through, would you think he was a desperate freak, or would you be proud of him for getting the treatment you know he needs?” I asked this in reference to someone close to us Blake worries about.

Without a pause Blake noted that he would be proud – and he made the connections.

“I guess I have some thinking to do,” Blake acknowledged.

An OCD Program?

You may have noticed above that Blake’s therapist did not suggest Blake consider going into a residential program for depression. He suggested a residential program for OCD. He suggested it at least twice (I didn’t include all the dialog). Why an OCD program? We never got to talk about it, but I think I know why. I believe the therapist thinks that much of what is going on with Blake can be traced to his OCD. Blake has an extremely low tolerance for uncertainty or discomfort of any kind. He actually shuts down and becomes unmovable when faced with an anxious moment. He prefers to live in a comfort zone according to rules he has determined are acceptable to live by (but that are actually dictated by OCD). He’s been living a life of religious rules for over six years that has been driven mostly by fear rather than joy and meaning.

Blake has something to think about. How much thinking he is doing, I do not know. I know he got himself out of bed for four days in a row – and he felt proud. And then he sunk into three days running of not getting up on his own and falling asleep for large chunks of time. He is mere weeks from leaving our home to finally beginning college in another state and living in an apartment with three roommates he will not know. If he elects to go to a residential treatment program, what would become of that?  For now, I don’t know. I don’t know what happens if he goes to college, can’t get out of bed to go to school, and returns home. I don’t know what happens if he falls backward enough not to be able to leave home. Like all things that are in the future, I am waiting to see. I’m hoping for the best, but not deceiving myself in acknowledging that this just might not go well.

 

Advertisements

Sharing – About Me

Recently, a patient came to session struggling more than usual. Depression had settled in on top of her Obsessive-Compulsive Disorder (OCD), which is not at all uncommon. It just happened on the heels of the deaths by suicide of Kate Spade and Anthony Bourdain, and it sparked her to act.

“I can understand how someone could do it,” she told me. “I can understand what it’s like to have it seem like it just doesn’t matter if you are here anymore.”

She went on to talk about what she felt like at the present time, and then it happened. Maybe I nodded with too much agreement. Maybe I empathized in such a way that sparked the recognition.

“You, too?” she asked.

“I once spent two weeks in bed. Only got out to do the essentials.”

It just seemed to spill out of me, my admission that I, too, have struggled at times with major depression. I didn’t share it for her sympathy or to make me feel better. It just seemed like the right moment to say, “Hey, you’re not alone, and this beast can be bested.”

“I’m sorry,” she said.

“It was before I knew much about how to deal with depression. I’ve learned a lot since then.” And then we had an in depth conversation about how to deal with her depression.

Sharing Personal Information

There’s a bit of a rule in the world of mental health professionals that we don’t share much about ourselves. The treatment session is for our patients, not the place for us to get our needs met. We have therapy and our own relationships outside of the therapy room for that. I actually came from a training experience that encouraged us to be “blank slates” to our patients. We were to answer questions about ourselves with, “How will the answer to that help your situation?” or “What makes you ask that question now?” It always felt strange to me to answer that way, but I did it figuring that I’d get used to it. I didn’t.

When I began treating individuals with OCD, it was already out there in the world that I was a parent of a child with OCD. I’d written articles about it and I shared about it with most of my patients if it seemed appropriate. Working with other parents, it seemed to give credence to what I was asking them to do. To many, it made it seem that I understood, on a deep level, what they were going through. For me, it felt more genuine.

I don’t know if it was the right thing to do, letting my patient know I’d experienced depression myself. I’m not going to try to justify it, and I’m going to have to continue to look at why, when, and how I share personal information with my patients. I do know that being more real feels like a better approach than being a mystery or a “blank slate.” I do things in session like share about the panic attack I had at forty feet below the surface of the ocean while scuba diving. I share about the intense fear I had of public speaking when I was younger – so great that it nearly prevented me from pursuing a career as a psychologist (we had to take an oral exam). And I share how I learned not to have these things rule my experience.

On the day my patient came in struggling with depression, I took the session outside. It’s not something a lot of therapists do, but it’s not so unusual. I took it outside because we uncovered the fact that my patient had stopped her daily walking routine a few months ago, and because we talked about the importance of exercise as one component in dealing with depression. And so we walked. She in her athletic shoes and me in my dress sandals. Together we sought out slight inclines in the neighborhood and we climbed them. I got blisters…and a note from her the next morning showing the miles she’d walked and describing how the fog was beginning to lift.

 

A Knife in Session: Thoughts on treating OCD

OCD can make simple tasks like cutting food unimaginable

I’ve been trying to write this post for several days now. I keep starting – and then I get stuck.  I can’t seem to think of the right way to write or how to organize it – so let me just start:

Last week, in Fullerton, California, a mental health therapist was stabbed and held at knife point by a patient. The ordeal ended with the patient being shot and killed by the police. The therapist survived. A tragic scenario all around and my heart is with everyone affected.

As the mental health community takes a few steps back to reflect and recalibrate, I find my own thoughts drifting to my work with Obsessive-Compulsive Disorder (OCD). Our psychological associations use happenings such as these as an opportunity to remind us how important it is for mental health practitioners to have a “safety plan” in place in case a patient turns violent. In the 2008 article “How to: Stay safe in practice,” published by the American Psychological Association (APA), author Christopher Munsey notes that mental health practitioners ought to “remove potential weapons” from our offices. This includes “letter opener(s) or heavy paperweight(s).” And yet this goes counter to the work I do in my office with my patients.

A Knife in My Office

Less than a week before the stabbing in California, I sat on the floor of my office with a young adult patient. We were no more than a couple of feet from one another. Poised between us, on a cutting board was a paring knife, an essential tool for the exposure we were doing. You see, my patient had not held anything sharper than a butter knife for over one year. Formerly a joyful chef in his home, his OCD caused him to worry over intrusive thoughts in his head that made him fear he might stab a family member (or anyone close by) if he held a knife. His cooking all but ceased. The whole family missed his meal preparation. And so, on that day on my office floor, we faced his OCD head on by placing a knife of his choice (I’d brought in an assortment) on a cutting board that he dared to get close to.

My patient’s anxiety skyrocketed as he approached the knife. He shook and he sweated as he inched closer and his hand reached toward it. We ended the exposure, 45 minutes later, with him having managed to place two fingers on the handle (lest you wonder if this was progress, it is of note that he began on the other side of the room, about six feet away). Tears fell out of his mother’s eyes as she watched from the sidelines and began to fully comprehend the extent of her son’s fears, as well as the bravery he possesses.

But, are we foolish…

Bringing a knife into session is not so unusual for those of us who treat OCD. If our patient has harm obsessions, sometimes a knife is just what is needed to stand up to the disorder. It is a reclaiming of what OCD steals from the sufferer, the ability to do a simple task most of us do not think twice about – cut our food.

Yet, the non-OCD community regards us, at times, as outlandish, misguided, or downright wrong about our approach to treatment. An extremely well-respected and experienced psychologist I know once shared a story in an OCD workshop I attended about how an insurance company representative questioned his methods. The conversation began something like this:

Well, Dr. X, if your patient is afraid she will harm someone with a knife, isn’t it ill advised to be using knives in your treatment?

The psychologist then had to explain to the representative, also a psychologist, how OCD is treated. It was completely a foreign concept to the representative. A sad state when insurers of treatment do not understand how a disorder is treated. But they are not alone. I’m fairly certain much of the psychology community does not understand what goes on in a treatment setting when OCD is the focus, and I’m pretty sure they’d be aghast upon first learning about it.

So, while my professional organization suggests I remove all items that might be used as weapons against me from my office, my treatment with patients with “harm” OCD often involves noticing what items in my office might actually be used as weapons. Of course our focus is on helping them to tolerate their anxiety about being in the presence of their feared thoughts and the everyday items that might trigger these. My taking these steps in treatment means I must do a very thorough evaluation of my patient and have come to a well-thought out treatment plan that is in keeping with their diagnosis.

What about the patients…

I also know that incidents such as the one in California will trigger many OCD sufferers. A population that already regularly questions its own sanity may point to this incident as evidence that they may go “crazy” and attack someone. It could make them fearful of doing exposure work in session (“I might crack while doing an exposure and hurt my therapist.”). Worse, it could make them delay attending therapy for fear they will do something similar.

Where am I going with this? Mostly, I am saddened that incidents like this ever occur. They are apparently rare, but they do happen. As an OCD therapist, like all mental health practitioners, I must stay aware of this and not take safety in the office in a cavalier way. At the same time, I must do a thorough evaluation of my patients and act in the best interest of helping them to get healthy and functioning again.

A Different Kind of Obsession and Compulsion

Providing further evidence that Obsessive-Compulsive Disorder (OCD) is not always what we tend to think it is, I submit the following experience from Blake’s recent therapy session:

I don’t frequently participate in Blake’s therapy anymore. In fact, if I do come in for something, he’s taken to asking me to leave at some point now. It’s a far cry from when he began therapy a year ago, or should I say refused therapy one year ago.  But that’s another story one can dig into the archives to read. Let’s suffice it to say that Blake choosing to go into a therapy session and talk with his therapist alone is major progress. Recently, though, I asked to come in for clarification on how the therapist had requested that the hubby and I handle something.

The basic issue was this: Blake had returned to his habit of getting back in to bed or falling asleep on the sofa in the morning. I was growing tired of repeatedly waking him and wondered if our plan needed to be modified. Blake’s therapist was looking to understand what gets in Blake’s way of staying awake. That’s when he shared this interesting anecdote.

Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net

“I work with a woman who cannot begin work in the morning if she has a certain body ache. So, she’s taken to checking herself every morning to see if she has that body ache, and most of the time, she finds it. So, she can’t start working and she keeps monitoring herself until it is gone. Actually, it’s OCD.”

Do you get it? Do you see the OCD? If you don’t that’s okay; I’ll explain it shortly. First, here’s Blake’s response:

“Oh my gosh. I get that,” Blake says. “I wake up feeling miserable in the morning. I’m so tired and I feel sick. I know if I start on anything that it’ll be terrible and I won’t like my work. So, I won’t work if I feel that way.”

“Then what we need to teach you is to work even though you might have that feeling. We have to teach you to work through that feeling,” replied his therapist.

Wait, did my son just admit to some OCD in his life? I don’t know if he realized it, but his therapist just implied that his issue with getting up in the morning had to do with OCD – and he agreed…

Where’s the OCD?

If all that escaped you, or if you just can barely make out the OCD, let me help. Think of obsessions as something that brings anxiety or discomfort up. Think of compulsions as bringing anxiety or discomfort down. It’s that simple. Now, let’s look at the patient the therapist mentioned.

The woman who works from home believes she cannot work if she has a certain ache. The concern she will have that ache is the obsession. That brings her anxiety up. The checking her body for the ache is the compulsion, as are the monitoring and refusing to work. They bring her discomfort down.

Blake holds the belief that he will turn out what he calls “trash work” if he feels tired or sick. That’s the obsession; it brings his discomfort up. His compulsion? Returning to bed or lying down anywhere and just checking out. He’ll only work if he feels “just right.” And that brings his discomfort down.

Is it a stretch? Could an OCD pattern be part of what is holding Blake back right now? Maybe. Maybe not. It’s interesting how he jumped on the therapist’s comparison. So, I wonder in my mind. Is it OCD? Is it depression? The therapist’s notion that Blake needs to work right through his discomfort fits for both – at least that’s what I think. Now, let’s see if Blake starts to do it…

“I Like the Way I Am” – and Why That Might be a Problem

“I understand what you’re saying – and I’m not interested.”

Blake is sitting in a chair in the therapist’s office and he’s frustrated and defensive. The therapist has brought up an issue that Blake has long refused to talk about – his Obsessive-Compulsive Disorder. Right now he is insisting that there is no problem. He’s happy with things as they are.

“I like the way I am. I’ve been this way my whole life and it doesn’t get in my way,” Blake says.

And, at the present time, this is true – for the most part. In the past, Blake’s OCD

Image courtesy of nunawwoofy at FreeDigitalPhotos.net

has GREATLY gotten in his way. As a young child, his fear of contamination prevented him from getting work done because the pencils might have been touched by other children. Handball with the other kids was out of the question. A dip in a lake where people might have urinated?  Never. His moral scrupulosity in middle school left me standing at the after school pick up spot for half an hour after all the other parents and children had left. Blake was in the classroom clearing every tiny piece of trash off the floor in response to his teacher’s request that everyone help pick up the room. Despite her repeatedly telling him he had done enough, he would not stop. Of course there was also the religious scrupulosity in high school. He would get stuck in a loop saying prayers over and over, trying to get them perfect, and this frequently made him late to school.

Fast forward to present day. Blake is eighteen, hoping to attend college next year, and working to combat depression. He still does little things that are OCD behavior, but he wants to leave them alone. It’s not a big deal, he says, that he washes his hands immediately if he touches money. So what if he washes his bed sheets because a piece of tissue that brushed up against the dog lands there? It’s not a problem for him if he repeats a prayer a time or two. And he cannot understand why his therapist is raising it as an issue at all right now.

“I don’t mind that I do things this way. Why are you bringing this up now?”

When You Have a History Like Yours…

“Blake,” says the therapist, “you’re right. The things you do now are not a big deal. Here’s the thing: if all you ever did was the things you do now, it would be fine. When you have a history like yours, though, where OCD has taken over your life, it’s downright scary to act like it’s not an issue.”

“I don’t understand. Are you telling me I’m not fixed?”

“It’s not a matter of fixed or not fixed. It’s about staying healthy. People with OCD who do the best after treatment work hard at staying healthy.”

“I understand what you’re saying – and I’m not interested.”

“Instead of rejecting this outright, I’m suggesting you consider the possible benefits to you of doing things to ensure your OCD doesn’t grow,” says the therapist.

“If you guys thought I was so sick, why didn’t you tell me before now?  Has this all been a ploy to get me to do exposures?” Blake is downright angry.

“Blake, nobody is saying you are so sick. It is concerning to your parents and I that you accept your compulsions as they are and that you aren’t willing to entertain doing what it takes to protect yourself. Your attitude puts you at risk for relapse and we all want you to start college in the best way possible.”

I sit uncomfortably in my seat, taking this all in. We have tiptoed around Blake’s remaining compulsions for some time now. Getting him out of bed and functioning seemed a more pressing goal. However, the OCD has been the proverbial elephant in the room, mostly because it has been so under the radar and because Blake has been insistent on not looking at it. The therapist is right, though. In my experience treating OCD, my patients who stay healthiest remember that they have OCD and do maintenance work to keep things that way. The ones who want to pretend that it never happened or that it can be ignored tend to relapse more frequently. My son is in the camp of wanting to pretend it’s not there. He leaves the therapist’s office furious.

“I’m Tired of Being Weak and Scared”

Blake is argumentative and demanding on the walk to the car. He tells me that he realizes coming to therapy was all about trying to get him to deal with his OCD. I explain that this is definitely a part of it, but not the only reason, which I know he knows. I am concerned, I tell him, about his unwillingness to take a look at how it might benefit him to acknowledge his OCD and do maintenance work.

And then the tears come…

“I’ve been weak and scared my whole life,” he says. “I’m tired of being weak and scared. And now I’m crying, which proves how weak I am!”

At this point we can actually have a truly connected talk. My young man is not weak. He may feel scared, but he is actually one of the bravest people I’ve ever met. He has stood up to OCD demons frequently in the past. It was tough and exhausting work. I understand his reluctance to revisit that, which is maybe why it feels better to him to allow some rituals to hang around. At the same time, it is important that he understand what risk he might be putting himself at if he maintains this approach. This, I believe, will be his work in the weeks and months to come.

Blake Decides to Increase His Medication

Image courtesy of Sira Anamwong at FreeDigitalPhotos.net

The big news this week is that Blake has decided to increase his SSRI (selective serotonin reuptake inhibitor) dosage. Seriously, it’s BIG news. I know. I know. For many on these medications, which tend to be the first line of defense in terms of medication for Obsessive-Compulsive Disorder (OCD), this is just a normal occurrence. Sometimes you go up in dosage. Some times you go down. That’s not the case for Blake.

Blake has been on the same dose of his SSRI since he was thirteen years old (13). He’s eighteen(18) now, in case you don’t know. That’s five years on the same dose. That’s more than two years of feeling he’d be better off dead. More than two years of people begging him to increase his dosage. His psychiatrist has begged, his pediatrician has begged him, his father and I have begged him. His therapist has encouraged him and challenged his reasoning on why he won’t increase his dosage.

“I don’t like being on medication,” says Blake. “It doesn’t help me.”

“How do you know it doesn’t help?” asks the therapist. “Maybe you’re not on a therapeutic dosage for you.”

“It doesn’t help. I don’t want to change it. It won’t help me.”

“How do you know if you haven’t tried?”

“I just don’t want to.”

Last week, the conversation came up again.

“Okay, I’ll give it a try,” he says, with little fanfare or need for cajoling.

He goes home and calls his psychiatrist and has begun a higher dose. I don’t know if it will make a difference at all in his major depression or in his OCD, but it is a big move for Blake to even try. So far, he is tolerating the increase well; however it has only been two days.

In other news, his therapist asked him this week how his week was. He’d been wondering how depressed Blake had felt in the past week.

“It’s been a good week,” remarks Blake. I haven’t heard him say that in – well, I can’t recall how long.

“So, it was a good week not to get hit by a bus?” asks his therapist.

“It was definitely a good week not to get hit by a bus.”

And Blake smiles.

 

I Just Wash More Than Other People

We pull into the parking lot and get out of the car. I notice that I’ve parked kind of crooked, so I climb back in, start the car up again, and straighten it out. Blake raises a hand to signal that I’m okay now. I notice the glove. It’s stretched out and missing the tip of the thumb where Blake has pulled a thread and the glove has begun to unravel.

As I climb out of the car and we make our way to the therapist’s office, I notice that both gloves are misshapen. The wrists sit limply against Blake’s skin, like they’ve been tugged at too many times and any elasticity is long gone.  Blake is dressed in a short sleeve t-shirt and cold weather gloves. I think he stands out in this appearance, particularly with his thumb halfway protruding from the shredded threads. I don’t say anything. I know better.

I gave these gloves to Blake a few winters ago. His hands get especially chapped and painful for a few months each year. He slathers them in petroleum jelly at night and pulls the gloves on to keep the goop from getting all over everything else. Today he’s wearing them out of the house; his hands must feel extra painful if he’s wearing the gloves during the daytime.

I Just Wash More Than Other People

As we sit in the therapist’s waiting room, I am certain that The Doc is going to comment on the gloves. Anyone who has ever dealt with OCD treatment knows that embracing uncertainty is paramount, but there are few things I can feel more confidently certain about than the therapist honing in on these gloves. In a few moments, my prediction is confirmed. The Doc steps out into the waiting room and, almost immediately notices Blake’s gloved hands. He steps closer to Blake.

“What’s this?” he asks.

“Oh,” says Blake casually, “my hands get really chapped and sore this time of year.”

“Why is that?” the therapist wonders.

“I don’t know. It’s just the weather.”

“My hands don’t do that.” He holds out his own hands.

Blake removes his gloves and displays them for us. They are red and raw. It’s obvious they are painful.

“Have you been washing a lot?”

“My hands have always gotten like this in the winter.”

“How long has that been going on?” asks The Doc.

“Always,” says Blake.

Indeed, I don’t think Blake can remember a winter where his hands weren’t painful, raw, or bleeding. His hand washing at age six was my first big sign that he had OCD. It was something I’d hoped would go away. Despite education and treatment, it is still here, twelve years later. Blake knows nothing but painful winter hands.

“Maybe you’re washing too much,” suggests the therapist.

“It’s not that,” Blake says. “I just wash more than other people, that’s all, but that’s not why. The weather just does this to my hands.”

“You know,” suggests the therapist, thoughtfully, “you could try an experiment. You could decrease or stop washing and see what happens. Then you’d know if it’s the weather or the washing.”

“I don’t want to. That’s disgusting.”

To Purchase New Gloves or Not

After therapy, as we drive home, I note to Blake that his gloves have seen better days. It’s time to toss this pair out.

“But they’re the only pair I have,” he laments. “Do they really look that bad?”

“Yes, they do.”

Blake reluctantly tosses his gloves in a trash can later that day and sadly wonders what he will do to protect his hands. I ponder whether I should buy him a new pair. My inclination is to purchase them (mind you, we live somewhere where the daytime weather rarely gets below the 50’s Fahrenheit), but I wonder whether I’m accommodating his hand washing behavior if I do. He hasn’t asked for new gloves, nor has he said anything about going to purchase them himself. For now, I’m waiting.