Double Duty

Image by Peggy und Marco Lachmann-Anke from Pixabay

It has been emotionally exhausting to be a mental health therapist this past year! Actually, it’s been emotionally exhausting being a human. As a psychologist, I have never before experienced a time where I have felt so many depending on me, while I try to navigate similar circumstances to the people I work with. And I have felt so drained after hours in front of the computer screen doing teletherapy that I have honestly found no energy to sit and write in this blog – until today.

Without going into details in this post, I will note that Blake and Michael are back in our home with the hubby and myself. What the future holds for them, and so many young adults I know and work with, is still to be written. For now, Michael is completing a graduate program from a distance, and Blake…. Well, Blake returned home wanting to go into therapy (not for OCD; for something else), and we are supporting him in doing that.

Now, here’s something to note: when you are a mental health professional, you cannot be therapist to your own family members. First, it’s actually considered a professional no-no. At the same time, your spouse and your children absolutely do not want you digging into their psyches. I mean, really, who among us wants our parents probing our emotional health? Makes sense, yes?

Oh, and also, the more you know about a subject, the more your family has absolutely no interest in hearing what you know. Yes. It’s true. I have specialized in anxiety and Obsessive-Compulsive Disorder for over a decade, write articles on these subjects, teach professionals at workshops, educate the public…BUT I KNOW NOTHING! If I even move to share information about anxiety or OCD among family, it is of no interest. So, I have learned (as my mental health professional colleagues have) to listen to my family, and even my friends, talk about their symptoms while I keep my mouth shut. I offer no recommendations or information unless I am specifically asked, lest it I be reminded, “Stop playing psychologist with me!” (and, yes, you do detect some frustration there – it’s like I know the coolest information, but no one wants to hear it. I digress.).

Anyhow, this state of “Mom-knows-nothing-about-anything-that could-be-helpful-to-me” made something that happened today all the more stunning.

“Mom…” Blake says. “How was it that I used to deal with intrusive thoughts when I was in ERP therapy for my OCD? I’ve been trying to purposely think the thoughts, but I’m only getting more uncomfortable.”

“Hmmm. Tell me a little bit more.”

“Well, I couldn’t sleep last night in part because of the thoughts, so I tried to think them, but it just felt worse. I didn’t feel better.”

“Would you be willing to tell me a little more, or would you like me to connect you with a colleague who can help you sort this out?” I ask.

“I’d like to see if you and I can figure out what I’m doing wrong,” he says.

“Of course,” I say. “I’m heading out to take something to Grandma. When I get back, you let me know when you’re ready. Set aside time with me.”

And I fully expected that would be that. When I returned home, though, Blake found me again. He actually wanted to learn what I know! And so we sat down. I was able to share the little understood secret of OCD: if you practice exposures with the goal of making your thoughts or discomfort go away, it will backfire on you. Your brain is too smart. OCD already tells you that you can’t handle being uncomfortable and that you’d better do something to make yourself feel better – and that is where it traps you.

“So, my job is to practice getting good at being uncomfortable,” Blake deducts.

“Yes,” I say, “but you have to have a really good reason that it’s worth doing that because why do it otherwise?”

And together we find his “why” and we create a mass of exposures he can use. He picks one he’s going to try over the next week. And then he says THIS:

“Thank you, Mom. It’s so nice having a therapist for a mother.”

And my heart is grateful.

Long Past Time for a Change

Raven* is exasperated. The feeling swells in her before the words come out. Tears of frustration born from years of suffering well up in her eyes as she struggles to wrap her mind around this .

“But why?” she asks. “Why didn’t anybody tell me about the right treatment for this? Why don’t you guys do a better job of getting the information out there?” She is pleading for me to help her make sense of something almost as unthinkable as the thoughts that torture her mind.

Raven has Obsessive-Compulsive Disorder (OCD). She’s the newest member of the free support group I run for adults with OCD. Hers is a story I’ve heard time and time again. She’s been terrorized for years by horrific and vivid thoughts and images. It’s meant time lost from work, time taken from her family (and from being a mother), hospitalizations, murmurings of psychosis. It took years to get a proper diagnosis, and years (and many treatment providers) after that to discover that there’s actually a treatment of choice – an actual best practice.

As the facilitator for this group, and the only representative of the professional mental health community, I struggle to explain to her, and the rest of the group members, about the disagreement in the mental health community. I try to explain the complexities where there really ought not to be any. But any words that come out of my mouth fall short. Thankfully, the group, and Raven, have shifted to a different focus.

My mind, however, has not moved. Raven’s question is simple and honest. She wants to know why, when she was diagnosed with OCD, she wasn’t immediately referred to a mental health provider who specialized in the most effective therapy for OCD – Exposure and Response Prevention (ERP), a type of Cognitive Behavior Therapy. That I am grasping for a reasonable answer taunts me. And the absurd realization that washes over me in this moment leaves me feeling embarrassed and ashamed, even unworthy of sitting in this room of brave OCD sufferers. We providers in the mental health community are not all trained to send people with OCD for ERP therapy.

An Open Letter

I rolled this issue around in my mind as I attended the 26th Annual OCD Conference in Austin, Texas. I spent an evening networking and brainstorming with other mental health professionals and advocates determined to further the cause of getting effective education and treatment to those who need it. Then something came my way that stoked the fire and increased the sense of urgency. It came in the form of a blog post that kept popping up in my social media feeds. I finally found time to click on it and read, unprepared for the emotional reaction that would ensue.

The post, titled “An Open Letter to Mental Health Providers,” by Jodi Langellotti is an impassioned plea to mental health providers from the wife of a longtime OCD sufferer. In it, she outlines the years her husband sought treatment for his OCD, going in and out of therapy and from therapist to therapist with nothing seeming to help. It wasn’t until six years into the process, when her husband, Chris, was “unable to care for himself” that a clinic program manager mentioned to the couple that there was actually treatment specifically for OCD and directed them to the website for the International OCD Foundation (IOCDF). On her own that evening, Jodi searched the IOCDF site and discovered the treatment that would begin the road to her husband’s recovery.

After sharing her family’s journey, Jodi implores mental health therapists to get educated, get properly trained, and to refer if they do not have proper ERP training. ” I am begging you to educate yourself,” she says. “Please, don’t tell people that you can help them with their OCD when you have had no specific training in treating this unbelievably complex and debilitating disorder. Please do not employ other forms of therapy which can actually make OCD worse, thereby increasing the suffering of your patient.“

Reading Jodi’s words tears me apart. It infuriates me about my mental health community, and it emboldens me at the same time. The IOCDF notes that “It takes an average of 14 – 17 years from the time OCD first appears for people to receive appropriate treatment.” (1) There is absolutely nothing that is acceptable about this. Specific treatment exists and the majority of those who receive appropriate treatment “will benefit from therapy, medicine, or a combination of the two.” (1) So why do mental health providers not refer those with OCD for ERP therapy? This is where it gets absurd.

We Aren’t Taught About the Best Treatment

Most mental health providers are not trained in graduate school on how to treat specific disorders, at least I wasn’t back in the late 1980’s and early 1990’s. I was trained on what the different disorders looked like, how they presented, and how to diagnose them. Instead of specific treatments, I was presented with theory and theoretical orientation. Choose the theory that best fits for you and approach mental illness accordingly. The problem with approaching mental health in this manner is that it is devoid of what I was taught as a practitioner-scientist. I wasn’t taught to go on “hunches” or what “fits” my way of thinking. Rather, I was taught to test hypotheses and follow the evidence – and the evidence overwhelmingly shows that ERP is the best treatment currently for OCD. Yet, the theoretical approach to practice persisted.

“Well,” you may be thinking, “she went to graduate school thirty years ago. Surely things have changed.” That’s not what I’m hearing. Shala Nicely, LPC, an OCD therapist, sufferer, and author, shares her experience in graduate school within the current decade in her personal memoir, “Is Fred in the Refrigerator? Taming OCD and Reclaiming My Life.” Astonished at the lack of information on treatment in the “Diagnostic and Statistical Manual of Mental Disorders,” she asked her professor where she might find a listing of of the types of therapies to treat disorders.

“There isn’t one,” she was told, “There isn’t agreement in the field about the best way to treat any of these disorders.”

Recent years have seen the emergence of “evidenced-based practice” in the field of psychology. Basically, this means practicing according to what research demonstrates works best. But this has not seemed to stop the adherence to theoretical dogma. Those of us who do ERP for OCD or who stand up for its efficacy frequently face challenges from our theory-bound colleagues. When I took Blake to an ERP trained specialist more than a decade ago, I was questioned by one psychologist about whether this “stuff” my son’s therapist was “doing actually helps.” My own psychologist at the time, a trained psychoanalyst, informed me that my son wouldn’t get better until the “underlying issues” were uncovered. But he WAS getting better before my eyes.

In the towns and cities where we practice, ERP providers are frequently one of very few. We are sometimes regarded as doing “crazy” work or torturing our clients, or we are told that we are only putting a band-aid on a gaping wound and that there is sure to be “symptom substitution” when our work is put into practice (in reality, that is NOT the case). On Facebook forums for therapists, we bear witness to endless misinformation about what causes OCD or what will be helpful to OCD sufferers. When we stand up for what the evidence bears out, we are frequently mocked or dismissed with statements such as “In my opinion…” as if the research on what hurts and helps in OCD can be dismissed by opinion. (Thank goodness for the amazing group that popped up on Facebook in this past year to support those of us who practice this work – but I digress).

I do not write this to disregard the numerous mental health practitioners who recognize best practices for treating OCD, or the increasing numbers who are clambering to get trained to do the work (as evidenced by the IOCDF’s Behavior Therapy Training Institute regularly selling out in minutes). I am acknowledging that not providing training on best practices in graduate schools, and having theoretical battles while ignoring what data tell us is having dire consequences for consumers and for mental health providers, alike. As Shala Nicely so eloquently noted in her memoir:

“It was a chasm that unfortunately swallowed two innocent groups: mental health professionals, who could leave graduate school unaware of how to effectively treat people with OCD or other mental disorders, and clients with mental illnesses who, like me, could suffer needlessly for years, even decades, as a result.”

Time for an Uprising

As I ponder Raven’s question, I am aware of the divisions that exist in the mental health community. It is reminiscent of political parties sparring over ideological systems while action languishes. There is no room for it while people suffer, yet still it exists. Like Jodi Langellotti, I implore my colleagues and the educational institutions that train us to take the important steps: teach the best treatments and refer to providers who provide them. General practitioners refer to cardiologists and oncologists, specialists, when needed. Mental health ought to be no different.

But I fear that my field will not change unless it is demanded by the public. So to all who read this, recognize that you have power, too. We may need an uprising of sorts – a grass roots movement. Do not believe you must wait for mental health to change itself. Speak up to your general practitioners and your pediatricians. Speak to anyone you know who refers for mental health services. Tell them that OCD must be treated by a specialist in ERP. Take documents from the IOCDF, the Peace of Mind Foundation, the Anxiety and Depression Association of America (ADAA), or the practice guideline from the American Psychiatric Association (2) with you.

Those of us in the trenches doing the work of treating OCD using the treatment demonstrated to have the best impact will keep doing our part to spread the word. But we are buoyed by the informed voices that come from the public. We are energized when we see you posting during OCD Awareness Week, when you show up at OCD Walks, when you host screenings of movies like “Unstuck: An OCD Kids Movie,” or when you tell your story on the news, in a book, in an article, or in a simple social media post. It’s long past time for a change. I don’t want to keep listening endlessly to stories like Raven’s. I’m ready for stories of, “I was just diagnosed with OCD and my doctor knew to send me to a specialist.”

______________________________________________________________________________

“An Open Letter to Mental Health Providers”: https://livinginchbyinch.com/an-open-letter-to-mental-health-providers/

International OCD Foundation: https://iocdf.org/

Is Fred in the Refrigerator? Taming OCD and Reclaiming My Life – by Shala Nicely: https://www.amazon.com/Fred-Refrigerator-Taming-Reclaiming-Life/dp/1732177007/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=&sr=

(1) International OCD Foundation Brochure – What is OCD?: https://iocdf.org/wp-content/uploads/2014/10/What-is-OCD-9-25-17.pdf

(2) American Psychiatric Association, “PRACTICE GUIDELINE FOR THE
Treatment of Patients With Obsessive-Compulsive Disorder”: http://psychiatryonline.org/pb/assets/raw/sitewide/practice_guidelines/guidelines/ocd.pdf

*No real names of group members have been used.

“The Hills Are Alive…!”

As I write this, Blake is buzzing around the family room. He’s just come back from a four day trip to visit a friend at college in another state. He does a half-twirl and lifts his arms, Julie Andrews style, and sings the first few words from “The Sound of Music.”

“The hills are alive with the sound of music!!” he shrills in a high pitched falsetto.

It’s a thrill to see and hear. He’s already thanked me and the hubby twice for sending him on this little trip, which is surprising because last year when he went to visit the same friend he came home sullen, depressed, and in an existential crisis. When his longtime friend asked him to come visit again we encouraged him to go, but we held no illusions about how it was likely to go.

Those who have followed this blog for any period of time know that my 19-year-old son, Blake, has struggled with Obsessive-Compulsive Disorder and severe depression for some time. He has an incredibly difficult time getting out of bed. He has had a difficult time finding anything that makes life seem worth living, and he’s hung on to low level OCD rituals that he claims he does not see any reason to change. My approach of late has been listen, accept, and love (and also to push him to get out of bed and the house on a regular basis).

So why the singing?

So why is Blake singing? Well, first, he actually enjoyed himself. He and his friend went to the natural history museum. They looked at dinosaurs (neither of my boys has outgrown dinosaurs). They played a new game. He actually felt open to the experience. AND there was MORE.

“Guess what, Mom? I got up and got out of bed on my own every day!” he says with a huge smile across his face.

This is no small accomplishment. Getting out of bed has been his most difficult task on a daily basis for a very long time. When he was away at school, he frequently was unable to get out of bed until around ten at night (and then he’d be back in bed within a few hours). It’s beautiful to see him so happy about this, but what he says next is a shocker to me.

“You know what else I did? You’d be very proud. I didn’t check the labels on the soda cans on the plane – not on any of the flights I took there or back.”

What this means is, he stood up to his OCD! One of his rituals is checking food and drink labels. He’s always had a rationale for it and he claimed it wasn’t OCD that had him doing that. On this airline, they don’t bring a drink cart around. They offer you a drink and they bring it to you already poured in a cup. You don’t even get to see the container. Blake’s OCD says this is a no-no. He usually doesn’t order. This time he did.

I notice Blake’s shoulders hunch up just a bit as he shares about the sodas. There’s a smile on his face, but his body language shares the accompanying discomfort.

“You’re telling me you allowed yourself to be uncertain,” I say. “I can tell that feels good, but it was hard. Good for you.”

He nods. Then he reached his arms out once again, and sings once more. “The hills are alive…!”

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.

These Spring Evenings

Spring has finally arrived in our area. The plants are blooming and blossoming. The days are warmer and the nights are still cool. The hubby recently completed a project of changing over our landscaping to a more water efficient and drought tolerant one. Consequently, our backyard is a joy to be in right now. Every evening that I get home later than the hubby, I find him sitting in a cozy chair on the back patio just enjoying. Frequently he is flanked by a dog on either side, and both of these appear equally as content as their owner.

Along with spending more time on the patio, the hubby has suggested we move several of our evening meals in the last couple of weeks outdoors. I’ve obliged him, and therein lies the issue for Blake. I’ve shared before that Blake’s Obsessive-Compulsive Disorder (OCD) has played a back seat role to his depression of late, but it is at times like this when it shows itself more.

“Are we eating outside again?” he asks.

“We are.”

“I’m guessing you’d like me to join you…”

“We’d love you to join us.”

I can feel the hesitation, the thinking, the rationalizing, the many things that must be going through his head. When we first realized Blake had OCD it showed itself in fear of contamination. Although it has had many incarnations, his OCD has never quite abandoned attacking him on the issue of things being contaminated. Our patio table is contaminated (it sits outdoors all the time). The chairs are contaminated (ditto). There are bugs out there (they might land on you or, heaven forbid, your food). I think even the outside air feels a little contaminated, but I’m not quite certain about that. It’s no wonder Blake is hesitating.

On one particular night, we have relatives over. We barbecue. I prepare the meal. The hubby prepares the table outside. Blake, as he has for several years now, prepares his own meal. I head outside with my full dinner plate and notice Blake at the indoor dinner table. He’s putting together his plate. One by one, my hubby and our guests all settle in for our meal. I’m guessing Blake will not be there, but I’ve guessed wrong.

Moments later, Blake has a full plate and he carves out space for himself. The rest of us reposition ourselves. He sets his plate down and leaves. He comes back with a can of soda in hand. I know what this is. Soda for Blake is liquid courage; it’s motivation and reward for doing something that is difficult. He joins us at the table. He eats his food. He actually participates in the conversation. At some point everyone except Blake and I have left the table for seconds or for dessert.

“I’m so glad you joined us,” I note. “How are you doing?”

“I’m glad to be here,” he says, and then he answers, “I’m uncomfortable. I’m definitely uncomfortable.”

I ponder this for just a second or two.

“Uncomfortable is good,” I respond – and it is.

So Lonely

Image courtesy of Ohmmy3d at FreeDigitalPhotos.net

“I’m just so lonely,” says the young adult in front of me, the despair apparent as the words sit in the air between us.

I’m sitting in the living room of my patient’s family home during one of my recent treatment visits. This past week has been one with slips backward and, to one so new to OCD treatment, they are demoralizing. OCD has taken such a huge toll on this young person’s life that friends and social activities have become a distant memory. OCD demands almost every waking hour and the rituals only end when sleep wins out in its urgency.

I’ve stopped doing exposures at this point in our session – I’m here to do exposure and response prevention (ERP – if you don’t know what this is, you can read about it by clicking HERE) work. My patient wants to do more, wants to move on and get better as fast as possible, but I realize it’s time to step back, time to help paint a clearer picture of what to expect. OCD treatment is not a race to the finish. It is about learning new healthier ways of managing discomfort. In this young person’s case, it is about rebuilding a life worth living – and that takes time and patience.

So, I’ve stopped the session. I’ve changed course. Sometimes OCD recovery is not all about exposures. Sometimes it’s about caring for the whole person and finding something to live for in the moment. Why do the hard work of beating OCD when there’s not something keeping one moving forward right now?

We sit on the sofa. We explore what’s going on. We connect. We realize my patient misses other people, misses being involved with something that is connected to the bigger picture. We brainstorm. We find a regular activity that is doable and that will provide uplifting moments. We look at when the next time there’s an activity available. We arrange for transportation and a companion to go with. For the first time in this hour, my patient smiles.

I get ready to leave and, suddenly, the twenty-something is standing in front of me, apologetic that we didn’t do more exposures today and didn’t get further in treatment. I gently and optimistically adjust that perception. We DID get further in treatment today. We addressed something that needed to be addressed. I encourage my patient to be kind to themself and I note, on the way out the door, that I will look forward to their renewed energy the next time we meet.

Eating Potato Chips Off the Therapist’s Floor

Image courtesy of khumthong at FreeDigitalPhotos.net

It’s a Thursday afternoon and I’m sitting cross-legged on our therapist’s office floor, carefully picking baked barbecue potato chip crumbs out of the tight weave of the carpet. I absentmindedly pop a larger piece into my mouth, savor the spiciness of it, and continue my task. My hubby is sitting on the ground close by, leaning against the wall and sipping iced tea. He chuckles quietly when the potato chip passes my lips.

This somewhat absurd scene began when the hubby showed up a few minutes late to our therapy session. He’d stopped for a bite to eat across the street. He still had his drink and his unopened potato chips in his hands.

“Do you mind if I eat my potato chips in your office?” he asked our therapist.

“Potato chips leave a lot of crumbs,” I say, automatically. Then I add, looking at our therapist, whose exposure antics are well known to me, “But maybe you wouldn’t mind that.”

“Oh, that’s right,” he says. “Potato chips can be very useful. May I borrow your bag?” he asks the hubby. “Sometimes I do this with them,” he says, and he empties the entire bag onto the office floor.

I burst out laughing and I glance at the hubby, wondering how he’s going to handle this. This is the man who admonishes me for some of the things I touch with my own patients who have contamination fears. He reaches for a large chip on the floor and pops it into his mouth. Blake says nothing, though I’m sure he places his face in his palms at one point.

Our therapist asks if we’ve ever sat on the floor at a party or gathering. Of course we have. Then he asks if we’ve ever gotten off the floor and gotten a snack and eaten it without washing out hands first. We both have. Blake is still silent. Our therapist explains that people without OCD contamination fears sit on floor and touch it and then go on to eat a snack with those same hands that touched the floor. He reasons that it’s not much different than eating potato chips off the floor. Then he shifts his attention and moves in to talk with Blake.

As Blake and the therapist talk, the hubby and I each bend over occasionally to pick up a chip and eat it. Soon, it becomes cumbersome and, being somewhat irrelevant to the conversation happening in the room, one at a time, we each move to sit on the floor. We take turns eating chips, as the pile grows smaller and smaller. What first seemed silly becomes a normal process to us, until I am left with tiny crumbs that I pick out of the carpet to throw away. I imagine to myself that this might be what it is like to participate in an exposure for OCD – feeling somewhat silly or hesitant at first, then feeling fairly normal. I also wonder if Blake has taken note that mom and dad were willing to be uncomfortable, even for a little bit. If he is, he isn’t showing it. For the time being, he has bigger issues to attend to.

 

OCD is Treatable

Image courtesy of Master isolated images at FreeDigitalPhotos.net

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:

• International OCD Foundation
• ocdtalk
• Alison Dotson
• The OCD Stories
• Jackie Lea Sommers

“I’m In an Exposure”

Image courtesy Stuart Miles at freedigitalphotos.net

“Hey Mom, I’m in an exposure right now,” Blake informs me. He sounds just the slightest bit excited.

“Really?” I ask. “What are you in an exposure for?”

I’m curious about this statement. Blake hasn’t talked about “exposures” in years. Certainly I haven’t heard anything of the sort from him since he refused treatment for his OCD just over three years ago. Exposures are an integral part of evidence-based treatment for Obsessive-Compulsive Disorder. The person with OCD places themselves, often with the support of a therapist, in situations that would normally provoke compulsions/rituals, but chooses not to pacify the OCD by performing those compulsions. Gradually, the OCD sufferer adjusts and learns to cope with what might have previously felt intolerable.

“Today is a special day, religiously,” Blake tells me. “I don’t know if there are any special observances I should be doing beyond what I’ve already done. I’m feeling pretty anxious, but I’m not giving in to it. I’m allowing myself to tell myself that I’m doing the best I know how and that has to be good enough.”

I know this is tough for him. We’ve been held captive in the house, at times, with Blake paralyzed over not knowing how to handle some religious observance (he is more religious than the rest of our family, having embraced religion about five years ago. OCD loves to mess with that and his obsessions and compulsions often revolve around religion). I tell him that I recognize this must be tough and that I’m glad he’s happy he’s made the choice not to give in to his OCD this time.

Blake is still struggling with depression and having difficulty with motivation. His OCD lingers mostly in the background, rearing its head from time to time. Yet, at moments lately, I see mini breakthroughs. He is more willing to talk about feeling anxious – something he would have become furious about in the past if I would have mentioned it. Just yesterday I heard him repeating a prayer as I sat next to him.

“Are you supposed to repeat that prayer at certain times?” I inquire. “I notice you just said it a second ago.”

“No,” he says.

“Oh, it’s an anxiety thing?”

“Yep, it is,” he replies – with no defensiveness.

That little exchange would have been unthinkable even six months ago. Perhaps he’s a little more mature. Perhaps I’ve learned to be less intrusive, to have less of that accusatory tone in my voice. Whatever it is, this little window of openness is nice.

As for the exposure he self-imposed, we never spoke of it again, but I’m pretty sure it went well. He went off to babysit our friends’ children, came home later and proceeded with his day. There was no frantic calling of religious authorities or begging me to text someone who is in the know. Maybe that is how Blake’s war with OCD will be won, with little hand-selected battles he feels ready for. If so, I’ll cheer him on quietly each time he takes one on.

 

Exposure and Response Prevention (ERP) Comes to Our Home (Re-Post)

This post originally appeared on this blog in August of 2013.  It has remained one of my most viewed posts.  The photos of Blake’s hands are probably the most clicked on photos in this blog, and appear at the top of Google’s Images when you search for anything related to OCD and hand washing (and they appear to be the first “real” image of what can happen to a person’s hands when contamination OCD leads to hand washing). I thought it was worth re-posting.

* Advisory:  This post has some photos of hands damaged from over-washing.  They may be difficult for some people to look at.

This is a nearly empty bottle of liquid soap.

It looks pretty normal sitting on the bathroom counter until you take a closer look.  That brown ring around the bottom of the bottle is dirt from our backyard.

The bottle of soap caught my eye several days ago and I snapped a few photos of it to remind myself of where we’ve been.  This bottle, with its dirt that is settled all around the bottom has been with us this entire summer – since before I even began this blog.  It is a remnant of one of Blake’s last OCD treatment sessions before we made the  heavy-hearted decision to stop therapy.  I am sharing it with you today, as a way to share what Exposure and Response Prevention (ERP) can look like.

What is ERP?

ERP is “the most important therapy in CBT for OCD,” according to the International OCD Foundation.  In a nutshell, ERP involves a conscious choice for a person with OCD to confront the items (thoughts, situations, etc.) that create discomfort and then not do the compulsions or rituals that would normally be provoked.   The idea is for the OCD sufferer to allow his or her anxiety and discomfort to abate naturally, without using rituals to cope and thereby creating healthier ways of coping.  This is commonly done with the help of a mental health therapist who is trained to do Cognitive Behavior Therapy (CBT) with OCD (for more information, Click Here.  Janet at OCDtalk has also written a thorough post on ERP.).

In our situation, Blake was really struggling with hand-washing compulsions (in addition to many others).  It was particularly bad at the time and he ran to the sink to wash anytime he felt the slightest bit “dirty.”  No amount of salves or special creams could heal the damage he was doing to his poor hands.  Below are some photos of how his hands looked around the time.  A reminder, these are 14-year-old hands.  They are painful for me to look at.  Anyone who pokes fun at compulsive hand-washing or thinks it is a joke has never lived with a family member who is suffering because of it.  The pain is real, intense and it interferes with day-to-day activities.

While Blake’s treatment team had done ERP work with him on the hand-washing at the office (they would touch “dirty” things and then he would not wash), we were seeing little impact of the exposures.  We all agreed at the time that Blake was “white knuckling” it through the exposure and avoiding truly immersing himself in it by reminding himself that he could wash as soon as he got home.  He never gave himself the opportunity to allow his anxiety to come down to a manageable level.  So, it was decided that one of his therapists would make the trip to our home.  The plan was for Blake and the therapist to “contaminate” our entire house so that Blake would not have a place of safety to run to in order to avoid his discomfort.

The Day Arrives…

Blake was in agreement with the plan, until the actual day arrived.  He was tired of painful hands and was hopeful that this exposure would finally put his hand-washing to rest.  He greeted his therapist, happily, at the door.  As they began to prepare for the actual exposure, he began to change his tune.

“I don’t remember actually agreeing to do this,” he told the therapist.  His anxiety was already on the rise, and he was trying to thwart the exposure from going any further.  His therapist and I reminded him of his desire to get better and advised him how important a step this was toward breaking free from the grip OCD had on his life.

Begrudgingly, he followed his therapist into the backyard where both dug into the dirt and began to put handfuls of it into a squirt bottle.  Then they returned to the house where they filled the bottle with tap water and shook it vigorously.  It looked like a muddy mess.  I silently gulped when I saw it.

“Are you really going to spray that mess all over my house?”

This was not going to be easy – and I really have no problems with dirt.  I can sit in it, get it under my nails, whatever…  But this – even I wasn’t relishing the idea of my house being sprayed with a bottle of dirty water.  The thing is, that was just the point.  Yes, it is uncomfortable to have dirt sprayed in your house.  It’s even kind of over the top.  BUT, it’s not going to kill anyone.  It is survivable – you can even thrive with dirt on your belongings.  The point for the OCD sufferer is to stick with the discomfort long enough to recognize that it abates and that they can have a good life without having to give in to their compulsions.

Reticent as I felt, Blake’s anxiety was rising through the roof.  He now wanted no part of this exposure.

“I changed my mind.  I don’t want to do it,” he stated.

His therapist reminded him that this exercise, as uncomfortable as it felt right now, was going to help put his OCD in its place.  She asked me to bring her all the bottles of liquid soap that were in the house.  I complied and sought them out.  Within a few minutes, I was back.  Blake was not in a good place.

The Battle Begins

While I’d been on my mission, Blake’s therapist had opened my bottle of dish soap (which Blake uses all the time to wash his hands) and poured a good amount of that muddy water right into it.  Blake was going to have none of that and before anybody could convince him otherwise, he’d dumped the entire contents of the bottle down the drain and placed the empty container in the recycle bin.

“Blake,” she reminded him, “we need to contaminate all the things you use to relieve your anxiety.  You remember; we talked about this.”

“No,” he said firmly.  “I don’t want to do it.”

She continued with her task and began to pour muddy water into the liquid soap bottles I had brought to her.  Blake’s face grew red.

“I said, ‘No’,” he stated.  “LEAVE.”

The therapist continued.  She was finished contaminating his sources of washing.  She took a rag and sprayed it with the dirty water.

“Come on, Blake.  Help me.  Let’s contaminate the house together. It’s better if you’re a part of this.”

“NO! LEAVE!”  His voice was powerful.  Anxiety was making way for fury.

“Remember?  You wanted to get better.  I’m not going to stop because I care about you.  I care about your hands and I don’t want you to have to keep living with OCD bossing you around and controlling your life,” she told him.

“THERE’S NOTHING WRONG WITH ME!!!!  I’M TIRED OF THIS!!! I’M TIRED OF BEING TOLD THAT I’M SICK!!!  SICK! SICK! SICK! LEAVE!!! GET OUT OF MY HOUSE!!!!”

Blake was absolutely getting out of control at this point.  He’d never said an angry word to his therapist before.  Now, he was screaming at the top of his voice and looking like a maniac. My heart was breaking for him.  I didn’t know whether to cry or burst out into giggles at the sheer anxiety the whole thing was creating in me.

His therapist continued with her quest.  She carefully wiped the dirty cloth over all the furniture, the walls and our personal belongings.  Our entire family was going to be in on this exposure.  But was Blake going to buy into it?

Blake Hits His Breaking Point

“I TOLD YOU TO LEAVE!!!  I CAN’T TAKE THIS ANYMORE!!  I’M JUST GONNA…”

Blake lunged for the pencil cup on top of the cabinet near him.  In one swift move, he pulled out the sharpest pair of fabric shears in the house and raised it up over his head, as if he were about to plunge it into someone.  But it wasn’t clear to me if he was going for his therapist or himself.

“Put it down, Blake!” I commanded, but my words weren’t necessary.  Blake’s hand hesitated in the air and his expression turned to horror and he began to tremble.

“What am I doing?  What am I doing?”

He ran down the hallway to the living room where he started sobbing.

“I’m sorry.  I’m sorry.  I’m sorry,” he repeated.

The therapist stepped outside to call her supervisor.  Blake looked at me through his tear-filled eyes.

“I wouldn’t have hurt myself,” he said.  “I just wanted her to stop.  I can’t believe how far I went to protect my OCD.”  He cried quietly for a few minutes until his therapist stepped back into the room.

“Do you want to talk?” she asked him.

“I’m so sorry,” he said.  “I wouldn’t have done anything.  I know what I need to do now.”

He walked down the hallway with a half-smile on his face and picked up the abandoned squirt bottle.

“May I?” he asked.

“Of course,” she answered.

He began to make his way through the house, squirting that dirty water on the walls and the countertops.  He covered his game consoles in it and his favorite sitting areas.  Tears streamed down his face, but now they were tears of relief.  He knew this was what he needed to be doing.  Then, he directed the therapist to his room.

“We need to do my room,” he told her and he contaminated his entire room with that water, making sure he didn’t miss a thing.

The Aftermath

Blake adjusted relatively quickly to his contaminated surroundings (although I did put away all sharp objects, just in case).  He didn’t care that there were pieces of dirt in the soap bottles.  He relished it when I reminded him that our entire home was contaminated.  He’d won another battle in the war on his OCD.  His hands healed.

But the other areas his OCD affected were untouchable.  He wouldn’t budge on them; held onto them like a badge of courage and battled us to keep them.  Of course, this lead to us ultimately discontinuing treatment and to being in the limbo that we are in.

Today I still find remnants of that exposure, though it is about 3 months in the past.  There are still places that are too high for me to reach where he aimed that squirt bottle – and I kind of like the bits of dirt that remain anyway because they remind me that we still live with contamination to some extent.  They also remind me how far Blake was willing to up the ante to protect his OCD, how powerful the disorder can be in asserting itself.  And I wonder when Blake will grow in his own power and desire to take it on.  We can only wait and see.

Related articles

• Let’s Talk About ERP Therapy (ocdtalk.wordpress.com)