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.

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“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: